sharing dc's diagnosis

[Anonymous]

How do others share diagnosis information w friends/acquaintances ? I hesitate to label dc to others for various reasons . Her impairment is becoming increasingly obvious as her motor skills are delayed. I tend to mention prematurity and muscle tone as opposed to medical diagnosis.

[Anonymous]

I don't mention my dc's medical diagnosis. The last thing I need is people googling it and freaking themselves out. I do mention "delays" which are plenty obvious, speech and language issues, etc, but the actual diagnosis, no.

[Anonymous]

It really depends. My DC has Aspergers and I tend to share because I've gotten really frustrated with the sense of shame that seems to go with ASD diagnoses. But this is a developmental disorder as opposed to something like a disease (not sure if thats what you are getting at, maybe a genetic disorder?) I don't think I would share the latter.

[Anonymous]

I think it depends on the diagnosis.

[Anonymous]

I tend to share with anyone who has significant contact with dc. I would much rather that my friends/his peers' parents know that he's acting aloof/strange because he has aspergers, thrn because he's just weird.

[Anonymous]

It's really a tricky thing... Often I say genetic disorder or muscle tone/ delay issues or medically complex. Many newer/school friends know that...older friends/ close neighbors know the bigger picture. I really struggle with this as my son has a right to privacy and there are a lot of potentially embarrassing pieces to his syndrome, especially sexual development stufff which is a good 5 years out. I am just not sure if it is my right to blab it to every nosy person who asks because they are curious.

[Anonymous]

I remember as a child my mother never shared my illness/problems with others (even relatives that asked). She viewed it as my private business and only my doctors and teachers needed to know.

As adult, I'm thankful for that. I share with/when I choose and I'm glad not everyone knows.

I understand not every diagnosis is the same, but as your child grows into an adult - think who they will want to have this information about themselves.

[Anonymous]

I share. He has Asperger's which explains many of his behaviors.

I grew up with an illness which I hid for yrs as a teen and young adult. Made me self-conscious. I found it freeing to not hide it finally in middle age. Many of my friends did not realize that I had this problem and I've known them for years.

DH is a stutterer and he also finds it freeing to explain what he has, especially in court. Otherwise it's just an elephant in the room which only makes people uncomfortable. It's easier to explain and move on.

No right or wrong answers. Depends on what makes you and your child comfortable.

[Anonymous]

Our child has a genetic disorder about which much is unknown including her intellectual potential. We are upfront with medical professionals but not the school system for fear someone will confuse it with a related disorder that has a much bleaker prognosis and decide that our kid is not worth spending time on. As for friends and family, our kid still "passes" for typical because she is young we have no plans to tell people including most of our family. When asked outright I vaguely mention "delays" like another pp. It's nobody's business but yours/the kid's and your physicians.

[Anonymous]

Thank you for all the helpful feedback!

[Anonymous]

DS has ADHD and anxiety. We tend to be more open about the ADHD DX but don't routinely share with everyone. We are very open with teachers on this and increasingly so in other settings - at least in the case of ADHD, it's very common and we've learned of several other kids with the same issues and this opens up a lot of mutual support. I understand the desire for privacy and appreciate some of the benefits, but I also think that being "private" also can be very stigmatizing.

[Anonymous]

Anonymous wrote:How do others share diagnosis information w friends/acquaintances ? I hesitate to label dc to others for various reasons . Her impairment is becoming increasingly obvious as her motor skills are delayed. I tend to mention prematurity and muscle tone as opposed to medical diagnosis.

I understand where you are coming from, but as a mom of a premature infant, this always freaks me out. People are always telling me their child has issues because s/he was born premature, and often I suspect that's not the sole or only cause. I totally understand where you are coming from, its just hard when you are trying to gauge future issues.

[Anonymous]

OP -- if it is CP, I understand. There is a lot of sitgma and misunderstanding out there.

[Anonymous]

I tend to come out and just say my son has CP because that's easier than explaining he has high muscle tone in his legs and arms and low muscle tone in his core, developmentally delayed, etc. Some people flat out say that they don't know what CP really means and i'm happy to give them a basic run down. I'm hoping to change people's perception when they think of someone with CP. He's still an infant and you wouldn't know anything was different with him unless you were analyzing how he sits while playing. I blog about our story and that allows me to keep family and friends up to date about his progress. My son has a twin brother who is typically developing so when strangers talk to me I'm vague about his developmental status even though i feel weird essentially lying ("Oh, he's not crawling yet, but he's so close!") even if it is to a stranger.

[Anonymous]

Anonymous wrote:DS has ADHD and anxiety. We tend to be more open about the ADHD DX but don't routinely share with everyone. We are very open with teachers on this and increasingly so in other settings - at least in the case of ADHD, it's very common and we've learned of several other kids with the same issues and this opens up a lot of mutual support. I understand the desire for privacy and appreciate some of the benefits, but I also think that being "private" also can be very stigmatizing.

Our oldest DS also has ADHD and anxiety and we do what you do. I don't know if our approach is what we should be doing but my DH wasn't diagnosed with ADHD until after our oldest was and he felt a lot of relief knowing that he wasn't just stupid or had character flaws. He has an actual disorder. It's kind of weird in a way but he no longer feels something's wrong with him, he just has ADHD. That's what I want our DS to feel like - there's nothing wrong with him, he just has ADHD. That's why we're pretty up front about it because we don't want it to be this shameful, secret thing. If he had one leg longer than the other, we wouldn't be so secretive about it. Is ADHD really that different? (That isn't a rhetorical question, it's genuine. Why is there such stigma about ADHD but there's not about having one leg longer than the other?)