How much do you tell friends?

[Anonymous]

Hi, sorry if this has been asked and answered before, but I was curious how much you tell friends and family about any of your child's special needs? My DC recently was diagnosed with a sensory processing disorder. To get to that diagnosis, DH and I obviously spent days taking off work to go to all kinds of specialists, etc. with DC. We both have co-workers we're very good friends with, so there was no disguising that something was going on since we were taking so much time off. Now our co-worker friends are asking us whether everything is ok and whether anything is going on with our DC -- in a totally nice and caring way. But DH and I are having a hard time figuring out what to tell people. We're worried about our DC being labeled or treated a little differently by these folks, who we know mean well, but we also feel disloyal for keeping it a secret even though they know something is up. We also don't want our DC to feel like there's something wrong or that we're embarrassed in some way. It's more of just a privacy issue for us. Now that we'll also be taking time off from work to do various therapy, we're trying to find a balance with respect to what to tell people about why we're taking the time off that also respects our DC's privacy. FWIW, the co-workers we're concerned about are very good friends, so a "none of your business" type of response really isn't how we'd like to handle it. So I'm interested in everyone's comments about how to handle this. TIA!

[Anonymous]

My daughter has SPD and the only person I've told is my best friend and only because her son has PDD so she's been through a similar ringer. I'm certainly not saying this is the right thing, it's just what I've been comfortable with thus far (it's only been about 4 months since diagnosis). Since you were upfront with your co-workers in the first place you should probably fill them in. SPD is a pretty manageable thing, but it's also very unknown to the masses, so it's your chance to educate people about it (something I swear I will do when I'm ready!). The more people that understand it, the easier time our kids will have.

[Anonymous]

My view is how ever much you feel comfortable telling a person. It does not have to be all at once. You could say we have some concerns that we are addressing but everything seems fine and then leave it at that. I understand what you are going through because I went through it myself.

[Anonymous]

I am very open about it, as it is what it is... just a part of what my kid is

[Anonymous]

I totally understand your concern (and share it), and am generally not very open at all except with some VERY close friends who don't live near here. Honestly, I'm just very paranoid about people labeling, stigmatizing, etc. I usually say my child has a speech delay/issues but that everything will be fine and leave it at that. Best of luck with everything.

[Anonymous]

Anonymous wrote:........ SPD is a pretty manageable thing, but it's also very unknown to the masses, so it's your chance to educate people about it (something I swear I will do when I'm ready!). The more people that understand it, the easier time our kids will have.

You should only do what you're comfortable with. I totally understand the label thing and people with typical kids and no experience with anything other than typical can be a little weirded out. I'm to the point now where I really don't hide anything but I also don't broadcast things (I've got 2 kids with SPD/ADHD). With intervention, our kids have a fantastic prognosis but they will have their issues their whole lives. I want to be sure when I talk about them it's in a way that is positive and matter of fact. It's nothing to be ashamed of and nothing communicates that more than how DH and I approach it. I also take the opportunity that everyone has processing/attention/impulse problems sometimes. They just have a little more.

Not to be judgmental or put pressure on anyone, I hope that if more of us are open about the challenges in our lives, there will be less stigma. We've got fantastic kids and they aren't defined by their labels. People need to know that.

[Anonymous]

I tell all. (One child with aspergers and ADHD, one with very mild ADHD). I've reached the point where I think this whole fear of stigma is more damaging than any stigma itself. My children and I have nothing to be ashamed of and I want to raise them to believe that these diagnoses are just one aspect of their complex and wonderful selves, not that it is any kind of heavy or awful thing. No one has treated them badly or labeled them in any kind of negative way, but teachers/counselors/other parents have more understanding.

The world will accept our children when we show them how acceptable they are. I'm with PP.

[Anonymous]

just another perspective here...op, be prepared for folks to be skeptical or even dismissive of the diagnosis and treat you like you are a neurotic hyperparent. btdt. don't let it take you by surprise.

[Anonymous]

10:32 again. I agree with PP. My biggest frustration has been other parents dismissing my kids' diagnosis. "Oh, they are always attaching labels to kids these days." I really hate that, its so unsupportive. And insulting, like I don't know enough to raise my child. I have family members from the bad old days when they didn't "attach labels" and they didn't get the interventions they needed. Its grim.

I think this is a much bigger issue than others labeling your child.

[Anonymous]

I agree with the PPs. I have a high functioning autistic child and a SPD child (who may when older be labeled something else like ADHD etc.) and one of the most frustrating things is when I am open about my child's diagnosis and willing to explain what it means for us and all I get back is a stare in disbelief. Now this typically goes away once they know my child better, but I have friends who are still thinking that "the label will go away". Almost 3 years into having a label my child has made tremendous progress with lots of intervention, but it doesn't mean he is not autistic. We have adapted as a family and learned to surround ourselves with supportive people.

With my SPD child it is ironically much more obvious that she has issues and some people seem to be more informed about senory integration than they are about Autism. So I'd say that you may find a mix of both with this label. Some people may dismiss it as being non-relevant, others may understand that this comes with the need of intervention, medical monitoring etc. I was surprised to find out how many kids actually got OT for sensory related problems and I was glad to find parents who could relate.

[Anonymous]

Anonymous wrote:10:32 again. I agree with PP. My biggest frustration has been other parents dismissing my kids' diagnosis. "Oh, they are always attaching labels to kids these days." I really hate that, its so unsupportive. And insulting, like I don't know enough to raise my child. I have family members from the bad old days when they didn't "attach labels" and they didn't get the interventions they needed. Its grim.

I think this is a much bigger issue than others labeling your child.

I'm 16:26 and I agree with these posts. It's incredibly frustrating, unsupportive and insulting when someone says these things - including 'all boys are like that'. No. They're not all like that and if they were, they'd all have the services and support they need.