how to ask about a sn child

[kaspears17]

Okay, so I do not have special needs children, but I do see them around, and I don't want to be mean, but sometimes I want to know about the child, but have no idea how to ask or engage the parent in conversation about it. I curious about special needs children and want to learn about them in hopes of someday adopting one, plus, my son is very curious and always asks about them as well, I don't know what to say to him, other than that baby/child has special needs, but I dont' know what kind. (FTR, he's a sensative kid and not mean about it, just curious) I have no idea how to ask a mom about her child for fear of offending her. Thoughts....

[Shaunam]

I'd rather people just come right out and ask rather than stare. Even if you think you are discreetly stealing glances, I can still tell. LOL I don't get mad when people stare, even if they are very obvious about it, but I do wonder why they don't just strike up a convo if they are curious. Probably because they are afraid they will offend me. LOL I can also tell when someone starts making small talk with me and WANTS to ask but doesn't. Lots of awkward silences and shifty glances. At that point I sometimes give a little info just so they know I'm ok talking about it.

Just start the convo like you would any other person. Don't just say "Hey you, why does your kid have a feeding tube?!" which I doubt you would do anyways. More like:

You: Aw what a pretty little girl, how old is she?
Me: 7 1/2 months
You: Wow, she's big for her age. May I ask why she has a feeding tube?

I would find absolutely nothing offensive or prying about that.

Usually, "Oh poor baby!" is not appropriate. My DD may not be able to do things other babies do and she may NEVER do much of anything. But she's a happy baby and she's loved. She's certainly better off than lots of other kids who CAN do typical things.

Hmm, what else?

No matter what don't imply that something could have been done to prevent it. Even if the parent seems completely clueless and probably DID contribute to their child's condition (think drug addict) they already know so there's no sense bringing it up becuse it will only upset them.

Like with my DD, a c-section would have prevented everything. But we did not know at the time anything was going to happen and I was a healthy mom with a healthy baby who already had one uncomplicated vaginal birth. There was no reason for me to have a c-section. So there's no sense bringing it up since I can't change the past. Instead just marvel at the fact that I pushed a 10 lb 9 oz baby out and didn't need stitches. :giggle2: The cord accident was a flukey thing that had nothing to do with me.

[mekat]

I have never spoke to a sn parent who has gotten upset at a little child's comment. Usually we treasure them because they are so open, honest and direct with no under lying negative feelings towards the disabled. It can sometimes be a challenge to turn something complicated into something simple for a young child. Mainly stick with super simple such as; her/his legs don't work or (s)he has a boo boo on his head etc....

I usually don't have a problem with direct comments/questions from adults unless they are meant to be negative. The only one that irks me that people genuinely don't realize they are doing is asking "What is WRONG with him?" or compare him to normal kids as in my kid is freakishly abnormal. It automatically puts me on the defensive. Try instead "what is his diagnosis" or "why does (s)he do/have xyz?" Even if they make verbal slips I try to over look them and politely answer their questions.

If you want to have an idea of dealing with special needs children. I would suggest going to a local school and letting them know you want to volunteer for the special ed program. It will give you a hands on experience and give you an idea of different types of abilities and disabilities, medical problems etc...

Things to think about.... Are you prepared for the possibility of having to bury a child before they reach adulthood? If absolutely not under and circumstances you may want to stay away from more medically fragile children. Are you prepared to take care of them for the rest of your life? If absolutely not under any circustances you may want to consider a child who less mentally, medically and physically involved. It is a lot easier to change cuddly tykes diaper and love doing for them. It takes dedication to change an adolescent's and adult's diaper and love doing for them. Same can be said for money, parenting etc...

I am not trying to discourage you just get you to examine which disabilities and what level of disabilities you are willing to live with in your family life. I know a lot of people just become permanent special needs foster parents instead of adopting out right and that is certainly another option to look into.

[rebelbets]

It all depends on how you go about it. If you try to engage the parent in conversation and then it naturally comes about, it would be okay to ask. But I'd recommend you not walk up to a parent and just flat-out ask. It's very invasive, IMO. I was at the park with my son, and he was using his walker, and a woman walked up to me and said, "What does he have?" It really rubbed me the wrong way. She was very demanding in the way she asked, and I wanted to respond by saying, "Um, what do YOU have?" Now, if she had started up a friendly conversation with me and then commented on my son's walker, I would have been happy to share with her.

I'm sure you have plenty of sense and know how to address this with moms of kids with SNs. As long as you show you are caring and compassionate, most people should be open to your questions. I know I don't mind talking about my son at all (he has a rare chromosome disorder and is globally delayed), but I don't appreciate people demanding to know what is "wrong" with him, KWIM?

-Betsy

[momto3g4b]

It all depends on how you go about it. If you try to engage the parent in conversation and then it naturally comes about, it would be okay to ask. But I'd recommend you not walk up to a parent and just flat-out ask. It's very invasive, IMO.

...I don't appreciate people demanding to know what is "wrong" with him, KWIM?

-Betsy

I absolutely agree with this sentiment. I don't feel I owe anyone an explanation about my kids just to satisfy their curiosity. Especially my older kids ~ they don't want strangers asking what is wrong with them (right in front of them!) and they certainly don't want to have to stand there being oogled by someone while their mother lists their various disabilities. No one likes to have their weak points focused on, ya know, and my children don't need to hear me always talking about them (or their siblings) and their "problems". I don't mind advocating for my kids and raising awareness about their conditions, but in the proper time & setting, which generally is NOT when I'm out at the grocery store with all of them. I do understand wanting to know, but (and I'm saying this as kindly as I can) it's not really your business and you don't have a NEED to know, so maybe you should keep your curiosity to yourself when faced with a SN child and use Google (or online message boards) to gain information about what life with various disabilities is like so you can decide what kind of SN you might be comfortable with when adopting a child.

I guess the question I would ask is why do you think you need to know what is "wrong" with children that you see? When your son asks questions, you don't have to know the specific diagnosis/disability in order to answer him. If you see a child in a wheelchair, you can usually assume their legs don't work as well as your son's or if it's obvious they have cerebral palsy, you can explain that to your child. If you see a child with a feeding tube, you can assume they have difficulty consuming calories orally. I guess I see this differently than a lot of people. Maybe because I not only get questions about my SN kids, but comments about my having a large family, so I'm not nearly as welcoming of strangers wanting information about my kids just to satisfy their own curiosity. It gets old being viewed as the freak show.

If a child asks me anything, I will answer their questions because they rarely are asking from a malicious, judgmental point of view. But I don't always enjoy adults approaching me because I've been the target of their judgment and/or unsolicited advice too many times. It's extremely annoying to have someone ask me why my son has a feeding tube and when I give the condensed version, they want to offer up solutions to what they see as a problem. Or hearing that my other son is autistic and feeling the need to start informing me of the fabulous treatments they've heard about and "have you tried XYZ???" To be blunt, it's none of their business and if a person chooses to share with them, they need to be appreciative of the parent's generosity and don't pry for more.

If you approach a parent of a SN child, be friendly and, like everyone else is saying, engage them in a BRIEF conversation before asking your question. Then be done with it. Don't patronize them with comments about how brave they are or how you could never do what they do or how they must be an awesome parent because God gave them such a special child. Don't tell them God doesn't give more than a person can handle. Just treat them like you would a parent of a non-SN child. The reason I advise keeping your conversation brief is because often parents of SN children are very busy taking care of their SN children and they don't have the time to stand around giving their child's medical history to a stranger.

[joshuas_mum]

Okay, so I do not have special needs children, but I do see them around, and I don't want to be mean, but sometimes I want to know about the child, but have no idea how to ask or engage the parent in conversation about it. I curious about special needs children and want to learn about them in hopes of someday adopting one, plus, my son is very curious and always asks about them as well, I don't know what to say to him, other than that baby/child has special needs, but I dont' know what kind. (FTR, he's a sensative kid and not mean about it, just curious) I have no idea how to ask a mom about her child for fear of offending her. Thoughts....

i dont have an SN child but DS was on home oxygen for 6 months, i had a lot of younger children ask why he had things on his face and what were they for. the parents always tried to pull the child away and seemed very embarressed (sp) i actually found adults were the ones to stare and make the 'ohhh poor baby' comments

i actually had one very sweet little girl one day in the store ask me if he had because he was very sick. her mama was telling her to come away and not be so rude, but i went down to her level and explained to her that DS had them because his lungs were a little porly and they helped him to breath.

i think most SN parents wouldnt mind you asking about their child, you can ask in a way that wont offend. and im sure parents would rather you ask then stare and wonder.

[Shaunam]

I don't feel I owe anyone an explanation about my kids just to satisfy their curiosity....

I guess the question I would ask is why do you think you need to know what is "wrong" with children that you see?

I don't feel this way at all. I feel like if people care enough to ask it's because they want to learn...to be educated, not because they feel they are entitled to know our business. Now if someone walked up and asked me what's "wrong" with my child, I'd be offended, but because the wording is horrible, not because they are simply curious.

I used to wonder about special needs people all the time. We didn't have any in the school I went to and I was just never around any. I had been around some grown-ups in wheelchairs, but they were mostly disabled because of amputations, not from brain injuries. I have always been curious about kids with cerebral palsy, but never thought it was ok to ask anybody about it.

Maybe if I had been told that it was ok to be curious, I would have learned a thing or two and would not have felt like the world was ending when I found out my DD was severely brain damaged. Seriously, I wanted to crawl in a hole and die. Now I know CP is NOT a horrible thing and I'm JUST now able to enjoy my DD for who she is at 8 months. I wish I could get back those months that I cried everyday out of grief.

People should be encouraged to discuss these things because we have to make up for lost time when kids with disabilities were stuck in homes and forgotten, hidden away from mainstream society. People are ignorant because we've spent so many years trying to pretend disabled people didn't exist. Which president was it that had polio and had to pretend he wasn't disabled so nobody would think him incompetant? That's a tragedy and it shouldn't be like that. We've come a long way, but we still have a long way to go. Maybe one day we won't have to explain to people why our kids have feeding tubes, or can't walk, or whatever else, because they will have been raised in a society that educates about these things.

But I also think we should focus on the positive things about our kids. DD may never walk, talk, or eat, but she is SO happy, smiles a ton, and is very sociable. Who knows what she will be able to do, but I know for a fact everyone loves her because she's a darling little girl, not because they pity her. So when people ask, I tell them that she has CP and what that means, but I also tell them that despite her physical disabilities, she's a happy, typical 8 month old who is spoiled rotten and knows just how to get her way. :giggle:

[jess71903]

I agree with most of the above. As long as someone doesn't say "what's WRONG with him", I am very open to talking about my son's needs. Right now, his aren't very obvious (he has spina bifida with a VP shunt), because hair covers his shunt now, and he isn't walking age, so nobody wonders about that. Eventually he will have a walker and braces, though, so I am sure the questions are coming. I am also an occupational therapist, so working with children with sn is my career (or was before I became a SAHM), so talking about it is no big deal for me. I would rather some come up to us and talk- getting to see DS's sweet personality- than assume he's one to be pitied.

[naivete]

I don't find that I get curious about it and I never ask, and tend to look at the child and treat them the same way I would any child. I don't have a SN child but when my oldest was young he had plagiocephaly and needed banded, and it annoyed me how I could never take him out or talk to people without answering so many questions. I didn't mind sometimes if the questions were polite but it just got to be a lot, where I couldn't go to the grocery store without people asking, and as polite as the people were it was hard to hold my tongue because sometimes it's just really not peoples business, but I'm not the type of person to like small talk anyways, I don't really talk to people I don't know, I have social anxiety disorder so that might be a part of it. I'm dreadfully shy in real life, so I'm not really the type to strike up a conversation with other people anyways.

I figure the person's right to walk around without always answering questions is more important then if I'm a little bit curious, if I'm curious I can go home and google feeding tubes and see how it works and why it's usually needed, I don't think you need to invade someone else's privacy just because you think they should have to educate you. (It's different if you're already talking to the person I suppose, I'm more referring to people who come up only to ask about it)

[tinab]

A lady I went through RCIA with has a sn DD, Abbey. She has smooth brain (I think that's what she said, I was too busy cooing at Abbey to memorize it!). People would stare in church and try to figure out what was 'wrong' with her. Kelly is so amazing, I never asked what was wrong (unless she missed a week at Mass, then it was about if Abbey was sick). I think I asked her how Abbey was. I was scared to ask, but my 4 year old wanted to know 'why that baby can't sit on her own' because Abbey was 2 (turning 3 now) and is blind and can't sit on her own. I can't remember the exact wording, but she thanked me for asking it without asking what is 'wrong'.
I have learned that you can learn so much and find so much love just by hearing the stories. Kelly is such an amazing mom and woman who feels blessed to have Abbey be hers. She doesn't know how long they will have her (Abbeys condition is part of her DNA and fatal), she just feels blessed to have been trusted to be her mom and to have her in their lives.
My ODD is great about sn people, she very rarely will ask what is wrong. ANother gal I went through RCIA with has a DD that has Down Syndrome. That girl is so spunky and cute, her 'average' sister and her are constantly one upping each other and just being so silly. They are both just 9 and 7 year old girls. Loralei loves to play with them and Josalyn prefers the girl with DS.
When I took Loralei to preschool testing, we saw a blind boy with a cane with his dad. They were just playing outside having a great time. I smiled at the father, he smiled back (I couldn't help but watch because the little boy was squealing with delight!), Loralei asked why he got to have a cool stick. I explained that he couldn't see and he needed it, she insisted that the boy must be really cool to have such a great stick! If only more adults could see things the way children do!
I have so much respect for parents with sn kids. It must be so hard to deal with the way people can treat you and your children. I took it on myself to explain Abbey to my MIL so she'd quit staring. Then I had to explain that the parents feel blessed to have her and need no pity. The time for comforting them isn't right now with Abbey alive and with them. This is a time for joy!

[EmmieSuesbabyboutique]

Like all the PP said, I don't mind people asking nicely, but please no pitty parties. One day I wanted to smack a lady...............she was like "oh poor thing, I am so sorry, poor thing" She just kept going on and on.
Finally I said "She is 8 years old, smart as a wip, and she's gonna live, she only has spinda bifida"
Or when someone says to me, "How do you do it, I know I could never take care of a child with SN." Reality check..............IF your child was born with a SN or something happens after their older, I KNOW you will not have a problem taking care of your childs needs.
Sorry had to vent a bit..........LOL

[amberof2]

I guess the question I would ask is why do you think you need to know what is "wrong" with children that you see?

Personally I respect an adult's curiosity as much as a child and feel strongly about increasing awareness.

I agree that's inappropriate to ask the question in front of the child and if there is a day I just don't feel like answering or feel the question was asked in an abrasive way, then I feel no obligation to answer.

However, if someone is just curious, I would like them to ask. It means that my son will, hopefully, be treated with a little more respect to his differences and maybe that others will make an extra effort to include him.
I think it is especially wrong for parents of other small children to scold when they ask questions about my son. The more they know when they are little, the better, because then they won't be making poor choices simply out of ignorance. kwim?

[Shaunam]

Or when someone says to me, "How do you do it, I know I could never take care of a child with SN." Reality check..............IF your child was born with a SN or something happens after their older, I KNOW you will not have a problem taking care of your childs needs.
Sorry had to vent a bit..........LOL


That drives me nuts too and makes me uncomfortable. I'm not an exceptional person and honestly, if you told me 9 months ago that I'd be able to deep suction a child and change a gtube I would have told you that you had lost your mind. :giggle: Most people, no matter how squeamish, or how lazy, or whatever, will rise to the challenge if their child is born with or develops special needs.

I was watching a youtube video...it was actually a mama from mdc, showing how to change a mic-key button and in the comments someone was like, "Omg, I could never do that to my child, blah, blah, blah." Another person was like, "dude, that's how he eats, you would do it if it were your kid!" And that's the truth.

I'm not a particularly strong person, but I'm stronger than I used to be because my DD needs me to be. I'm no different than anyone else though.

[drenotdoctor]

I usually don't mind. Infact, if someone even looks like they may want to ask, or might be staring, I'll just tell them.

usually it starts when someone asks how old he is, or he is throwing a tantrum (because we tied his left shoe before his right shoe, or he ate 4 chicken bites instead of 5) lol

"Micah has autism, and doesn't always deal with everyday situations like you or me."

"His name is Micah. He won't answer you directly, but he knows you are talking to him. Micah has autism, and has a difficult time with communication. If you ask him what color his shoes are, he might tell you." ;)

something like that. I honestly don't even mind when ppl are "rude" and ask "what's wrong with him?" unless it's just really snide. I've actually answered back "I guess he just doesn't like you" lol (that was a nasty ol lady in wal mart)