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

[Anonymous]

I k ow this is going to feel like a minefield of a topic, but I’m honestly trying to understand why parents with kids with SNs don’t want to disclose to parents of their child’s friends what their specific needs (NOT diagnosis) might be.

DD (7) has a friend (9) who she was in class (split) with last year and remains friendly with as she’s in the area and they’re on the same bus. Friend clearly has some issues, which DD and I are sensitive to and work around. DD enjoys to play with friend for short durations but does get frustrated as friend will only engage in certain activities, will not play with the other kids on the street, will only eat certain foods, etc. I have other concerns as a parent as she zones out if in the pool and won’t listen, similar on bike rides, etc. She is a very sweet kid.

The past week, friend’s parents, who normally WAH, had some childcare issues I was able to help with as I WAH as well. This meant we had kid for about 3.5 hours each after school for a few nights.

My issue is I constantly feel like I have to figure out what kid needs to make her (and our) time run smoothly. I had already figured out she’d only eat foods of a certain color after school, but was met with a lot of rudeness and hangry when I didn’t accommodate the specific brand that she likes on juice, food, etc.

I know this is a sensitive area, but things would have gone so much more smoothly if I knew what was going on and wasn’t constantly chasing moving goalposts on what she needs to be happy and comfortable in our environment.

I feel like we are kind and welcoming people so I don’t know why parents wouldn’t disclose at least their child’s needs to us, or bring what she needs. Our DD has a few quirks of her own that I always discuss with parents, but maybe I’m more open as she is NT and perhaps I don’t feel we will be judged?

Please help me mitigate communication so if we have to help again we can provide the best time for both kids. DD is so frustrated with how things went this week. She’s hurt that friend was so rude about snacks and activities and such. I explained that not everyone is the same (which she knows) and that sometimes people have bigger feelings about things we don’t feel so big about. DD is a kind kid, but I’m also feeling frustrated that I could have saved a lot of pain by knowing what chip brand to buy.

Thank you for your help and answers.

[Anonymous]

I think it’s rude they didn’t tell you if you’re watching her to help them out.
Is there a chance she doesn’t have a diagnosis though and they just think she’s “ quirky” or “ picky”
I babysat for a little boy many years ago who was 5. Sweet kid and the mom told me he was a young 5.
After 2 afternoons looking after him though I realized there was more to it so asked. Turns out he had adhd and anxiety. She said she didn’t want him labeled all the time and that’s why she hadn’t told me. But knowing made me change the way I cared for him and my expectations of him.
There’s so much information out there now that I think it’s helpful to know.
My kid has adhd and not everyone needs to know but if in a learning environment where her focus and attention are going to be an issue I tell people.

[Anonymous]

I would ask them to pack her food. That way if her preferences change you won't have to keep up.

And I would coach your DD on not taking things so personally.

[Anonymous]

I understand OP.

I had a drop-off 13 birthday party for my son and one of the children dopped lives with autism. NBD as my son's best friend has HFA and assumed it would be the same.

The child was mute and didn't eat. Just sat in the seat. I really wish the parents would have told me how to interact with their son, or not. Turns out one of the dads who also had a son with autism sat with the kid and told me he'd "take care of him". Later, told me "he's fine".

[Anonymous]

Anonymous wrote:I understand OP.

I had a drop-off 13 birthday party for my son and one of the children dopped lives with autism. NBD as my son's best friend has HFA and assumed it would be the same.

The child was mute and didn't eat. Just sat in the seat. I really wish the parents would have told me how to interact with their son, or not. Turns out one of the dads who also had a son with autism sat with the kid and told me he'd "take care of him". Later, told me "he's fine".

The parents may not have known their kid would behave like that. Selective mutism often co-occurs with autism. It may be kid is verbal and interactive in most of their usual settings.

[Anonymous]

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

[Anonymous]

Many parents are in denial and/or entutied and feel they deserve a break. It’s like the intents who don’t share diagnoses when hiring sitters. I mean why wouldn’t you want to set everyone up for success?

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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?

[Anonymous]

Because it’s not actually any of your business and you are not part of the child’s therapy team. It doesn’t sound like she actually caused any serious issues other than rudeness. It’s your home - you are free to correct her and request she speak politely. You don’t actually have to have the exact brand of chips she wants. It sounds to me that you are being nosy and more interested in putting a label on her because she makes you uncomfortable; that way, you can reassure yourself that your kid is normal and she is “other.”

[Anonymous]

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?

because it’s not anyone’s business!! it’s my kids private medical information. do you feel the need to disclose your own child’s medical issues? for example when she starts to hit puberty will you tell people - “Sorry, Larla is hormonal and on her period!” when she is cranky?

[Anonymous]

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.

[Anonymous]

OP, have you asked them?

Just know they also may feel unsure how to discuss.

[Anonymous]

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.

Fwiw, that's not a SN. That's a kidism that some SN kids have and some NT kids have.

If you think the parents are laying a minefield for you to traverse, then you're not going to look kindly on them. If you think that the parents are just regular parents, like you, then maybe you wouldn't see issues but would just see a kid.