SN parents, why don’t you disclose or share?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

While hers might sound like it, we know it's about many families. There are many more who ignore it all.
We had that happen in extended family. We knew a person over a decade and nobody says a word. When life got hard, it got really hard for them, and nobody knew why. Too late now.
Don't want to know or want to hide, keep them safe. Others can't do it without some of that information.

NP. Knowing some letters would not have made anything easier except your curiosity.

For the OP, kids are different in different situations and environments. It's quite possible that the family doesn't know what information you would have liked to have, either because it's not an issue at home or it's not an issue for them.

When soothing the kid, she said she only eats X. Ever. When I asked the parents, they did confirm but also said they didn’t know why she was being so picky. Of course she is more selective on comfort foods in a different environment. To me, this was such an easy solution.

This was the path of discovery for many things over the week. I don’t care if it’s labeled a quirk or an SN, i just want kid to have a good time here if i am tasked with watching her as a favor. 12+ hours out of my week, and my child’s is a lot and we deserve the kindness of understanding. We can be empathetic but we could also be armed to help reduce the stressors that made everyone uncomfortable.

I guess what gets me is meeting this kid for a few minutes, you see that she is very particular. We adore her anyways and want her in our
Lives. I just wish the parents knew that we are actually here to help, but that help requires a meeting of truth. Finding out her “things” when they are stressors isn’t my job.

No OP, nobody owes you their child’s personal medical details. If you don’t want the child at your house just say so. And for the child, if you actually care, having her speak for herself to you is actually good for her. You seem to think the parents confessing “she’s autistic” w open some magic door. It’s a weird belief.

I think I said in my OP that I don’t need a diagnosis. What I need is to know her particular “quirks” so it makes it a safe and happy environment for her, my kid, and me. But I keep finding out things that would have made things so much easier had I known them before this all started. I truly don’t care about her diagnosis- I care about knowing the things that will make her happy and feel
Safe, but I feel like those are under local and key as I suspect they’re tied to the more complicated umbrella of a diagnosis.

That said, your answer says a lot about why I haven’t been told I can only serve x juice and x flavour chips by x brand and can only offer x activity.

This kid is unreasonable regardless, decline.

[Anonymous]

Answer: because I think my SN kids act enough like NT kids that it isn't information that other parents need before my kids go to their house. Since I've never heard any feedback from others to the contrary, this seems to be correct.

OP, have you gone back to her parents and told them the issues? Or are the issues not really that severe?

Maybe my kids are intolerable outside of the house, too, like this girl, and it's just that no one has ever told me so I don't know.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

+1. Part of what makes playdates good for all kids, either SN or NT, is the chance to experience things that are different from home, a look at how other families operate. The child didn't get her preferred snack at your house, she survived, everything is fine.
I don't think for most SN it's encouraged to cater to all of a child's quirks, gently challenging them is sometimes preferable.

[Anonymous]

Not op. I don’t think it’s about catering. It’s about wanting to be helpful. The same way I’d ask about allergies, etc. I think some sn parents have their own internalized ableism to contend with

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

I Am interested in listening. But help me set her up for success. A different environment may be enough. I can offer something else, but if she only ever eats x brand of y, let me make sure I do have that so the whole experience is good in the end. To me, there is no bonus in sending an overwhelmed kid who is hangry home for the “experience”. I’m all for letting her ask, but I I dot have what it sounds like she needs, where is the benefit in that exercise?

[Anonymous]

Has the child been diagnosed or are you making assumptions, OP?

[Anonymous]

Anonymous wrote:Not op. I don’t think it’s about catering. It’s about wanting to be helpful. The same way I’d ask about allergies, etc. I think some sn parents have their own internalized ableism to contend with

unless the kid will truly starve then it’s not “internalized ableism” to let them go to another house and handle the food options. i

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

+1. Part of what makes playdates good for all kids, either SN or NT, is the chance to experience things that are different from home, a look at how other families operate. The child didn't get her preferred snack at your house, she survived, everything is fine.
I don't think for most SN it's encouraged to cater to all of a child's quirks, gently challenging them is sometimes preferable.

She survived, but it was a very difficult 3 hours for her, me, and my child as she was uncomfortable and hungry. This wasn’t something I was being paid for, and actually lost work time for. My child lost out on her regular playtime with other friends.

Why leave it to someone else *without them knowing* that you were challenging your kid?

Again, happy to help but disclosure in how to make it better would
Have made it so much easier on everyone .

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

I Am interested in listening. But help me set her up for success. A different environment may be enough. I can offer something else, but if she only ever eats x brand of y, let me make sure I do have that so the whole experience is good in the end. To me, there is no bonus in sending an overwhelmed kid who is hangry home for the “experience”. I’m all for letting her ask, but I I dot have what it sounds like she needs, where is the benefit in that exercise?

OP just stop hosting the kid. It sounds like you resent it and you’re getting toxic about it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

+1. Part of what makes playdates good for all kids, either SN or NT, is the chance to experience things that are different from home, a look at how other families operate. The child didn't get her preferred snack at your house, she survived, everything is fine.
I don't think for most SN it's encouraged to cater to all of a child's quirks, gently challenging them is sometimes preferable.

She survived, but it was a very difficult 3 hours for her, me, and my child as she was uncomfortable and hungry. This wasn’t something I was being paid for, and actually lost work time for. My child lost out on her regular playtime with other friends.

Why leave it to someone else *without them knowing* that you were challenging your kid?

Again, happy to help but disclosure in how to make it better would
Have made it so much easier on everyone .

Sorry and that was 3 hours, several times this week. So let’s say 12 hours.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

+1. Part of what makes playdates good for all kids, either SN or NT, is the chance to experience things that are different from home, a look at how other families operate. The child didn't get her preferred snack at your house, she survived, everything is fine.
I don't think for most SN it's encouraged to cater to all of a child's quirks, gently challenging them is sometimes preferable.

She survived, but it was a very difficult 3 hours for her, me, and my child as she was uncomfortable and hungry. This wasn’t something I was being paid for, and actually lost work time for. My child lost out on her regular playtime with other friends.

Why leave it to someone else *without them knowing* that you were challenging your kid?

Again, happy to help but disclosure in how to make it better would
Have made it so much easier on everyone .

Sorry and that was 3 hours, several times this week. So let’s say 12 hours.

OP are you really here on the SN board to complain about how some SN parents aren’t doing it right? Just stop. If this girl’s needs are too much for you to handle then don’t host her again. If you actually think there is additional information that could help now then talk to the parents and ask. But you seem to be under the mistaken impression that SN hold some kind of secrets to “make” our kids behave normally outside of the house. We do not. WYSIWG mostly. It seems like you are actually resentful of something else here.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

I Am interested in listening. But help me set her up for success. A different environment may be enough. I can offer something else, but if she only ever eats x brand of y, let me make sure I do have that so the whole experience is good in the end. To me, there is no bonus in sending an overwhelmed kid who is hangry home for the “experience”. I’m all for letting her ask, but I I dot have what it sounds like she needs, where is the benefit in that exercise?

OP just stop hosting the kid. It sounds like you resent it and you’re getting toxic about it.

How am I being toxic?

I want information so I can set her up for success.

I guess this is my question, but I can see that there’s an issue even with that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

I Am interested in listening. But help me set her up for success. A different environment may be enough. I can offer something else, but if she only ever eats x brand of y, let me make sure I do have that so the whole experience is good in the end. To me, there is no bonus in sending an overwhelmed kid who is hangry home for the “experience”. I’m all for letting her ask, but I I dot have what it sounds like she needs, where is the benefit in that exercise?

OP just stop hosting the kid. It sounds like you resent it and you’re getting toxic about it.

How am I being toxic?

I want information so I can set her up for success.

I guess this is my question, but I can see that there’s an issue even with that.

It’s been answered OP. If you feel like you need to see the kid’s IEP before you host, just stop hosting. Nobody is trying to pull a fast one on you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

+1. Part of what makes playdates good for all kids, either SN or NT, is the chance to experience things that are different from home, a look at how other families operate. The child didn't get her preferred snack at your house, she survived, everything is fine.
I don't think for most SN it's encouraged to cater to all of a child's quirks, gently challenging them is sometimes preferable.

She survived, but it was a very difficult 3 hours for her, me, and my child as she was uncomfortable and hungry. This wasn’t something I was being paid for, and actually lost work time for. My child lost out on her regular playtime with other friends.

Why leave it to someone else *without them knowing* that you were challenging your kid?

Again, happy to help but disclosure in how to make it better would
Have made it so much easier on everyone .

Sorry and that was 3 hours, several times this week. So let’s say 12 hours.

OP are you really here on the SN board to complain about how some SN parents aren’t doing it right? Just stop. If this girl’s needs are too much for you to handle then don’t host her again. If you actually think there is additional information that could help now then talk to the parents and ask. But you seem to be under the mistaken impression that SN hold some kind of secrets to “make” our kids behave normally outside of the house. We do not. WYSIWG mostly. It seems like you are actually resentful of something else here.

Where did I say they’re not doing it right?. I’m seeing to understand why information that helps their child is withheld and asking why some can gain more understanding.

And sorry, what I see is not what I get, when I find out that kids usual is x and I wasn’t told that. This would be moot if I hadn’t experienced this with both these parents and other parents before.

I care about the kids, and the relationships out family has with them, which is why I am seeking to understand why these “quirks” are such secrets? The kids that these seem to be truly “quirks”, parents share. Where they are more or less needs, there’s some kind of secret clearance .

I want to HELP. But I can’t help with want I don’t know. I can’t ask, so I’m wondering how to approach from here form a space of kindness and willingness, and even here, I’m met with hate. When that? I did 15 hours of unpaid childcare last week without the tools that would have helped us all. I’m not resentful, or toxic. I did it without question and without harm. But I’m asking to understand.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP it sounds like your concern relates to one family so why are you making it about all SN families?

I’m not making it about “all” families. We have families in our life that do disclose. I am trying to understand why parents may not, when it would only help the situation. We are always flexible and kind with this kid, and I feel a very flexible and kind home. I am asking ALL parents because I would like different insights. Everyone has a different story. Is that so wrong?

And I am NOT saying I need particulars like dx - I just would like to know that she needs x,y,z. Or sometimes x,y,z happens. We have seen this kid in full meltdown when her bike “doesn’t go the right way” and I get it. Just tell
Me she needs x brand of chips in x flavor so I can make the evening easier on her and on my kid.

Nobody actually knows that though OP. There’s not a secret instruction manual you aren’t getting.

The parents do though, as kid says she gets x,y,z every day. If that’s what she gets, why would
You not set (or WANT to set) everyone up with success for the 4 days she was here?

sigh. I guess you’re totally uninterested in listening. PS having the kid exposed to other households and have to ask for what she wants is GOOD for her. you also don’t have to give any child exactly what they ask for. the snack isn’t medicine.

I Am interested in listening. But help me set her up for success. A different environment may be enough. I can offer something else, but if she only ever eats x brand of y, let me make sure I do have that so the whole experience is good in the end. To me, there is no bonus in sending an overwhelmed kid who is hangry home for the “experience”. I’m all for letting her ask, but I I dot have what it sounds like she needs, where is the benefit in that exercise?

OP just stop hosting the kid. It sounds like you resent it and you’re getting toxic about it.

How am I being toxic?

I want information so I can set her up for success.

I guess this is my question, but I can see that there’s an issue even with that.

It’s been answered OP. If you feel like you need to see the kid’s IEP before you host, just stop hosting. Nobody is trying to pull a fast one on you.

Seriously? How is asking to know what the kid needs in my house asking for an IEP?

This is what makes me sad. I can make accommodations if I know what they are. I don’t walk around each day with a crystal ball, nor do I know what your kid needs to make them happy and healthy and calm. How is that so intrusive if you’re trusting me with them for hours? I don’t need their diagnosis. I need to know they only eat blueberries and watermelon gushers or whatever it is that they need after school to make them happy. I don’t want their 3 hours here to be stressful, and I don’t want to hand off a hangry and irritated kid to you. I also want my kid to come home into her environment and not be walking on eggshells because I am doing your family a favor.

I also don’t want your kid to
Merely survive. I want them to have a good time at my house, with the snacks they prefer, while
Experiencing a different environment and timetable than their usual. I suspect that that may be enough some times.