Question about info sharing

[sahara78]

Probably a silly question, but I'm curious how you guys handle questions about care or activities. DD is currently going to an ABA center 30 hours per week. She also attends a private Pre-K two mornings.

I've been keeping DD's ASD diagnosis private for the most part, so how do I answer the "What daycare does she go to?" Query. I've told people the pre-K name a few times, but I worry about a Pre-K mom asking sometime.

Also, DD goes to PT & adaptive horseback riding, which she talks about a bit. Not sure if I should add details to explain a bit or not.

[macchiatto]

That can be tricky.

FWIW ... DS attends our zoned elementary school but has a lot of therapies and this summer he went to a social skills camp. If I mentioned to someone that he was at camp, I was somewhat vague in my answer and described the range of activities. If they asked the name of the camp, I went ahead and told them the name and just hoped they wouldn't Google it. (Though even then, it's a social skills camp for kids with a range of Dx so it wouldn't necessarily give away the ASD.)

He just finally got the official ASD Dx last spring (after being listed "at risk for autism" by his previous DP for years). We've been quite private; only 4 IRL friends (a DP, a child psychologist and two counselors) know and no family; even Leo's twin doesn't know. (He's a blabbermouth. )

[waverly]

Ours is a little different since he has hearing loss and the hearing aids are clearly visible, so there is no hiding it. I don't post things on facebook, as DS (and I) but it is more for him and DH are more private people. So he has had many surgeries, and I have never posted prayers for surgery or anything like that. So as far as that goes only family and close friends have known all of that, and people at my work as I had to disclose or they asked. I never told work people about his hearing loss, just his ear tubes etc. But they have since seen him and saw the hearing aids. I have mentioned he is in physical therapy or at least said repeating kid appointment to co-workers.

So I guess because of that we are kind of "out" in the community as far as the hearing loss/ speech portion of it. I have mentioned to parents that I knew somewhat well about his physical clumsiness, and they were supportive as one was a speech therapist. But I only told 4 people and the school in the IEP.

I haven't really mentioned to other parents about his physical therapy, except 3 maybe. It's not super obvious. I need to tell my other friend since she would be interested but it hasn't come up in conversation, and I haven't seen her.

As far as school, they both attend the public school and attend regular summer camp, so that part is not obvious. I don't say much about speech, but that is at school as a pull out so again not obvious, and just hasn't come up.

People do ask what school they go to, so I do tell them but since it is not a special needs school it doesn't give away a diagnosis.

What do you worry that the pre-K moms will ask? I would just say she is home with you when not in school. You don't have to tell them about the ABA.  Or you could say with a caregiver since she is (if you are at work) just at an ABA center rather than what you are implying as home with a babysitter. Do you think they will straight out ask you a diagnosis if it is obvious enough to do so? You may want a couple of prepared sentences and go with super vague. Like oh we are working on some skills there for the horseback riding. You don't owe a stranger your life story if you want to be private about it that is your call.  Oh and then change the topic, most people will get the hint and the rest that keep pushing are assholes so feel free to walk away.  Got to go see ya. 

[sahara78]

Thank you both! I may just tell people it's in South MyTown and leave it at that. Vague but hopefully not too evasive sounding.

waverly, I'm probably worrying for no reason. Last week, I talked to a mom from both dance & pre-k. She mentioned the daycare wasn't a good fit for her daughter, so I worried she'd ask about where DD is now.

Honestly, I'm not sure if people suspect she's on the autism spectrum. I've had people tell me she's quiet. I wouldn't be shocked if another mom of a kid with ASD could tell.

[auntie]

Late to this party.

Sometimes other parents are just making conversation or looking for information that could help them make choices for their own families. Sometimes other parents have a suspicion (because they have a nephew or family friend on spectrum or taught sped before having kids) and are dancing around for information either because they're curious or wonder if you know yet.

DS was dxd at the end of kindie. Over the summer he had a packet of work to be done, so I used to take him to the local library to do a couple pages and pick out new books. It's a tiny library- about the size of my living room and staffed by volunteers. One of those volunteers had an older son with the same dx as DS. She recognized his behaviors and really struggled with whether she should say something. At the time, the average age at the time of dx for Aspergers was around 11-12. Her son had been dxd at 12 and in middle school and things had not gone well for him. She wanted to spare us what she'd been through and bravely said something. She was really relieved when I said DS had a dx already although she didn't have anything good to say about his psychologist.

Other ASD parents know. I have met a couple of kids over the years- 3 IRL, whose moms I turfed to specific SLPs or dev pedis knowing if the kid had ASD it would come out. All 3 moms came back and asked if I had suspected.

Nobody needs to know your kid's medical history just because they're curious. You'll run into the same families over and over if you stay where you are now. At some point, ASD will be your DD's story to share or not.

You could always tell other parents she's with family or a friend when she's not at preschool. If she talks about the horses, you could just say she has lessons with a friend or you could say she does it to work on gross motor skills or something.

[miranda]

I had a hard time framing my response. On one hand, you certainly do not have to share diagnosis with anyone. On the other hand- sometimes talking about it reduces stigma and educates folks. I've struggled with this from the beginning. At first we told no one. Then I found myself wanting to tell people just to shut them up (not admirable, I admit). For example, in kindy I volunteered on Picture Day at school. It was our job to make sure each classroom got their picture taken. I mentioned to the other parent volunteers that we needed to check on the ASD classrooms and they all looked uncomfortable. Finally one said "What are those?" It really bothered me that at the PTA meetings and Site Council meetings the ASD program was never mentioned. I've always felt like at our school the kids with ASD are invisible- but then again, it is an invisible disability. We've since started a SN parent group and created a sensory room for all kids to share, but it's still not great.

Sorry I don't have a lot to add- just to say I have a hard time deciding when/if to share, and it has only gotten harder as DS gets older. Sometimes I wish I had shared to just to get some insight from others, other times I've regretted it because the responses vary from empathetic to asinine.

[waverly]

miranda, I agree. It varies widely depending on the person. I hate the dumb questions too, which I should be sympathetic and realize they are coming from a good place. But things like does he wear his hearing aids at night was hard for me to answer with a straight face or not over explaining in a patronizing kind of way. Or when people questioned his heart surgery like oh didn't that get fixed? Um are you a doctor? I am not explaining this to you besides he is having heart surgery and no more questions please. You don't need his whole detailed history just because you are curious.

But overall, most parents have chosen the not mention it path, which I appreciate because I don't always want to be that person that has to educate and explain. But I know some people want people to mention it to them. Our school also houses the DHH coop for the local area, so I think that helps a lot with the faculty at a minimum.

Anything overly emotional like the loss of his twin I really didn't like to share at all- no one at work and only a couple of friends one of which responded in a not so great manner and we are no longer friends. So if I am not emotionally up to it then I don't share. But some things being out there because they are out there and there is nothing I can do about it- I just accept that as a parent of a special needs kid that control is an illusion including control of his information.

[sahara78]

Thanks again for all the insight. I've only told a few people about her diagnosis, so I definitely won't tell other parents just because they hint around it. But I also want to have a few pat answers ready so I don't feel awkward around idle chit chat (like daycare questions). DD said she wants to be a physical therapist on her "All About Me" poster for pre-k, so I guess anyone seeing that would guess she goes to PT. At least she didn't say ABA therapist?

auntie, I'm sure you're right about other parents recognizing it. I have suspicions about a boy in a group we're in; wish there was a way to broach it without upsetting anyone. We should probably try out a few local support groups, as it would be nice to meet others in person who "get it".

[akafred]

Just to add a more NT-centric answer lol. When DD was little and we would make friends on the playground, LOTS of people asked what preschool she was in. I don't think they were fishing for info. While I might be able to guess about a kid with ADHD in elementary, it is less likely to happen in preschool since the demands are so low, esp on a playground. And there aren't alternative preschools for ADHD anyway. Heck it usually isn't dx'd that early. So from my perspective this is a common polite question for young kids. IDK why considering most people aren't looking for a change. Just small talk, I guess.

[waverly]

Oct 26, 2017 9:59:25 GMT -5 sahara78 said:

Thanks again for all the insight. I've only told a few people about her diagnosis, so I definitely won't tell other parents just because they hint around it. But I also want to have a few pat answers ready so I don't feel awkward around idle chit chat (like daycare questions). DD said she wants to be a physical therapist on her "All About Me" poster for pre-k, so I guess anyone seeing that would guess she goes to PT. At least she didn't say ABA therapist?

auntie, I'm sure you're right about other parents recognizing it. I have suspicions about a boy in a group we're in; wish there was a way to broach it without upsetting anyone. We should probably try out a few local support groups, as it would be nice to meet others in person who "get it".

I probably would have guessed a member of the family was a PT. Your might think otherwise, but it seems like almost everyone has gone to PT at some point. The PT in and of itself is not a big deal to me. It's more the ASD that it sounds like you want to keep to yourself for now. So unless you think the PT would lead to additional questions; it wouldn't personally bother me that much. It's more the underlying cause behind it. And luckily no has asked. I'm blessed with mostly non asking polite parents- thankfully!

[macchiatto]

Oct 29, 2017 14:40:09 GMT -5 waverly said:

Oct 26, 2017 9:59:25 GMT -5 sahara78 said:

Thanks again for all the insight. I've only told a few people about her diagnosis, so I definitely won't tell other parents just because they hint around it. But I also want to have a few pat answers ready so I don't feel awkward around idle chit chat (like daycare questions). DD said she wants to be a physical therapist on her "All About Me" poster for pre-k, so I guess anyone seeing that would guess she goes to PT. At least she didn't say ABA therapist?

auntie , I'm sure you're right about other parents recognizing it. I have suspicions about a boy in a group we're in; wish there was a way to broach it without upsetting anyone. We should probably try out a few local support groups, as it would be nice to meet others in person who "get it".

I probably would have guessed a member of the family was a PT. Your might think otherwise, but it seems like almost everyone has gone to PT at some point. The PT in and of itself is not a big deal to me. It's more the ASD that it sounds like you want to keep to yourself for now. So unless you think the PT would lead to additional questions; it wouldn't personally bother me that much. It's more the underlying cause behind it. And luckily no has asked. I'm blessed with mostly non asking polite parents- thankfully!

That's how I've tended to feel; PT is probably the least stigmatizing and pretty common for people to go through at some point so I'm a little less reluctant to mention that than anything else. Plus for him the clumsiness/gross motor difficulties are a little more obvious than his other challenges.

[freezorburn]

I’ve treated this as a situational thing. DS is high functioning enough, and responding well to ABA, that currently at age 5 he can pass for NT in many situations. I don’t know if this will continue to be the case.q

I do feel strongly that talking about it can help de-stigmatize. So I don’t necessarily lead with it, but I don’t feel like I need to conceal it, either.

I will talk about the dx if it is appropriate to the conversation. I recently attended a meeting that was the beginnings of a PTA committee on inclusion and diversity. The conversation was mostly about race and culture (which I appreciate, as an Asian American woman), but we also touched on different family structures, and it got to a point where I felt a need to mention that our school also serves a number of students with (mostly physical) disabilities, some of whom are classified as medically fragile. And that we should consider the experience of these students. And footnote, DS has an invisible disability.

Another situation — recently DS was invited to a birthday party of one of his new classmates. You could stay or drop off kiddo. I didn’t know the parents. I wasn’t sure if I should mention the Dx. I talked to DS about the concept of a drop off party, that I would not be staying with him. And he has been stretching his wings a bit lately, so I felt he would be able to handle it. In the end I decided to just let the birthday boy’s parents know that they should just give me a call if DS needed/wanted me to pick him up early. I don’t think it would have served a purpose in this situation, to mention ASD. Likely a year or 18 months ago this would not have been the case. There was a long time when I could not imagine the possibility of dropping DS off, since his anxiety was so high. Nowadays is a different story.