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Special Needs
Princess_Lily
member
How to cope with the needs of your child & privacy?
Princess_Lily
member
How do you keep a balance between keeping your child's medical information private, while being with friends and/or family?
How do you breach the subject if something is causing a negative effect in behavior? How do you handle making plans with others, and they ask what your doing this weekend, and one of the things is therapy...Do you even discuss it, or do you ignore?
How do you cope with others " helpful suggestions" in his behavior/actions, when they are 100% unaware of an issue?
I am having difficulty with balancing his needs and keeping his medical information private. Do you not discuss anything with anyone unless they are a caretaker? I also don't want to make a mountain out of a molehill too....
I would love to understand and learn how others cope with the needs of theirchildren & their privacy.
This discussion has been closed.
Re: How to cope with the needs of your child & privacy?
Between the adoption and now the educational issues, I have come to walk a fine line on privacy issues. The first thing I, as a very open person, had to learn is that there is a difference between privacy and secrecy. I'm not keeping any of these issues/conditions a secret, I am just sharing on a limited basis.
Most often, I only share with people I know I can trust and/or those who need to know. There's a lot I don't even share with my parents, because I can't trust that they wouldn't tell their closest friends, "because you know, x doesn't talk. She would never tell anyone!"
That being said, there are blanket statements I've made to help others make more sense of things. It's not uncommon for me to say things like, "M had a really rough life" or "we had a really rough transition when M came to us and there was a lot we all had to work through" as a way to indicate that there are things I don't want to get into that may be impacting the way I handle a situation.
I also don't ever want my sons to feel that they have anything to be ashamed of, so I do not hide that we go to therapy as a family or that we have pasts/medical/educational issues that impact our present. So I will totally acknowledge therapy/medical/educational appointments openly. No one has to know what they are for, just that they are normal, everyday issues.
But honestly, for me, a lot depends on who I'm talking to and how it comes up. I think it's just something you grow into with time.
I don't have a default answer. I basically weigh it against - what would happen if they didn't know - would it be bad for Chris? If the answer to that question is yes, then the party gets a heads up. If no, then they don't need to know. If they ask, I'll tell.
Sorry I don't have a better answer.
Good luck.
For us, I use "need to know, want to share".
So for everyone who needs to know - yes, they get told. Teachers, care takers, other professionals get all the details.
Want to share - close friends or family whom I trust and feel like I want to share.
Everyone else, nah. Nosey Mom on the playground? Distant cousin? Judgy aunt? Nope, nope and nope.
As for appointments - this hasn't really come up for us yet. But I can see myself saying "We can't do thursday because I have an appointment, but how about friday?".
I'm an open book. I've never felt the need to keep my son's conditions private from anyone, even strangers at the playground. I've found sharing it usually results in a parent saying "my child/family member had x too, they're doing wonderfully now!" I don't go around announcing it to random people but all my family members/close friends know since it comes up in conversation in some manner.
When someone gives me a "helpful suggestion" I smile, nod, and move on just like I would any other piece of unsolicted parenting advice. I had that kind of stuff happen long before I knew I had two children with special needs--I didn't expect it to stop.
I communicate with all teachers and daycare teachers about DS so that they know what is going on with DS.
My parents know about DS's issues and are all supportive.
My BIL's and SIL's don't know. I don't see how it should be any of their business and they live far away. MIL does not know either. When my DH will tell her is up to him and when he does my MIL will blame me and then think she has pdd-nos because she is a hypochondriac with anxiety and depression.
My nephew was evaluated for ADHD and my MIL said she had ADHD. My BIL has bipolar and she thought she had bipolar.
I came to this realization at a very odd moment. When I had DS2, because of the c-section I had to stay in the hospital for a few days and on day 4, DH finally brought Chris to meet his little brother. First off, Chris had no desire to have anything to do with this baby person his daddy was shoving in his face. Our dream moment of the boys meeting was more along the lines of Chris whining and crying because he wanted to run around the room and play with our phone instead of having anything to do with this baby thing that daddy was holding.
As I sat on the bed, I watched him - keep in mind I hadn't seen him in about 4 days. And I saw them - the odd hand motions - the odd side-eyeing of everything, the inability to stay still and I thought to myself "this is what everyone else sees". It was a big eye opener. And since then I have started mentally preparing myself and steeling myself for sharing (this is something that is extremely hard for me - even with non DS related things). I would rather ppl know that he is on the spectrum than thing "what a brat" because that's not fair to him at all.
I think this is one of those things where it's okay to be inconsistent.
We shared DD1's dx with immediate family very quickly -- my dad arrived from OOT for a weekend visit a few hours after we got the dx, and we told him later that weekend. Then we started making phone calls.
On the other hand, we live far from all relatives, and our extended family has no real reason to know. My grandparents will most likely never know; same for my and DH's aunts and uncles and cousins. We see them so rarely that it really isn't an issue, IMO. If it were to come up during a visit, I may or may not decide to share. I grew up in a very small, rural town and know how gossip works there -- I don't particularly feel like giving the old biddies (even those who are dear to my family) something so private to cluck and sigh and "did you know?" over.
For things like the gym daycare or certain activities, I've tried a trial-and-error approach. Sometimes I tell them upfront, sometimes I wait until there's an issue. Usually when we get to the point of having an issue and they tell me and I mention autism, I get a lightbulb-going-on reaction -- they knew something was different but didn't know what. Which means I probably should've shared sooner, I guess!
I opened up to the other parents of kids with IEPs in DD1's class last year. If we get to the level of a playdate, I've always shared with the other parent. And even on the playground -- we ran into another little boy on the spectrum at a playground recently and it was a very sweet encounter partially because both his father and I were willing to say, yes, my kid has ASD. But they're strangers we'll probably never see again, so there aren't a whole lot of consequences to sharing like that.
I'm very cautious about what I post or like on FB that is autism-related. I have very mixed feelings about sharing that info so widely. I do want DD1 to eventually have some control/determination of her own comfort level with sharing her dx, and I feel like if I'm not circumspect on FB then I'm taking away from some of her future choices in that realm.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
I've been fairly open about it--for one thing, last spring Alex had 6-7 appointments a week and people who were used to getting together with me for play dates, etc., wondered why I was suddenly so busy. Or people comment when they see evidence of his gross motor delays and sensory issues. There are still plenty of people who don't know and I lose track of who knows/doesn't know.
Personally, I've appreciated the people in my life who were open about their kids' challenges and special needs because I knew who to talk to when I developed concerns about Alex. I'm happy to be a resource and sounding board for other people if they have concerns, are wondering about EI, etc., so I'm fine with people being aware that we're dealing with delays and therapies. I haven't mentioned it much if at all on FB but I share more one on one.
I haven't told random strangers, most of the other moms at preschool, etc., but I think the need to know/want to share principle makes sense. Like auntie said there are times people will assume worse scenarios if they don't know the truth and I'd rather they be able to understand Alex better in hopes that they'll be *less* judgmental, or more sensitive with the comparisons they make out loud with his twin brother.
I'm still finding the balance.
Our immediate family know his diagnosis and what it means in basic terms (our parents and siblings). All of my family who I speak with on a regular basis know. Fewer in DH's family know but his grandma does.
Most of my friends know. I think three parents at preschool know. A few in the playgroup I'm in know.
It's a balance. I'm finding the more open I am the more special needs parents I'm finding. It's not only nice to find someone who "gets it" but the resources and information I've learned is invaluable. For instance, I heard from a mom that one of the charter schools I was considering when DS starts K did not have the resources to handle her kid's SPD issues and they had to switch schools within the first 2 weeks. Also, by reaching out and sharing with a mom whose kids go to the other charter school I'm considering I was connected with another mom she knows who has two kids on the spectrum who attend that charter.
DS 09/2008
Thank you ladies, for all of your helpful advice/experiences.
So really, like everything in life, its just finding a balance...
We just got the evaluation/dx done through a private therapist, and I'm in the process of going through the preliminary channels to for assistance with therapy. The therapist is requesting 3x per week in OT, and speech 2x per week, but with our income we can only support 1 day of each...so...whatever help will be beneficial for him in the long term.
Given this information, I would definitely seek an evaluation through the school system. You might qualify for services through them, too.
I agree.