how much do you tell people about SPD?

[lisavark]

Yesterday we had an OT evaluation and DD was officially diagnosed with sensory processing disorder (tactile defensiveness). It is such a relief. I've been pretty sure for a while but it feels really good to have an official diagnosis.

So after the OT appointment we went to the farmer's market and ran into a friend who, of course, greeted DD by tousling her hair. (why do adults always want to do that to kids?!? And then get offended when kids don't like it? Would YOU like it if some stranger touched your head?) DD, of course, rubbed her head and pushed my friend's hand away and made an irritated sound. My friend seemed a little irritated--again, why do adults always get offended over this?!?--and I said, "We're getting therapy for that." Kind of in a joking way. But then I explained that we really were, and that DD has SPD and is very sensitive to being touched. And my friend--who a second before had seemed surprised and annoyed--suddenly started talking about situations when she doesn't like to be touched either, and then she got on her knees so she could talk to DD on her level and apologized to DD. It made me really happy because I felt like, for the first time ever in that kind of social situation, somebody acknowledged and validated DD's feelings about being touched. This kind of thing happens ALL the time--usually with strangers, or at least people who are practically strangers to DD--and usually the adult gets offended and I feel like I have to apologize for DD's behavior even though she did nothing wrong and can't help it. It makes me really mad.

So now I'm thinking: how much should I tell strangers that DD has SPD? I don't want to "label" her or train her to think of herself as different, but I was so thrilled at how my friend suddenly saw DD's reaction as valid when she understood the reason for it. I hate it when adults act offended because DD doesn't want them to touch her. Of course it should be ok for her to just not like it, but people always seem to take it so personally. And a lot of times they keep trying to touch her again, like it might get better if they keep trying. But when I said DD has an actual diagnosis, all of a sudden the attitude toward her seemed to change. The adult actually apologized! So...I'd love other people's thoughts on this. Would you tell a stranger or new acquaintance what's going on when DD gets upset because they touched her? Or only close friends? Do you think it's bad for DD to hear me labeling her like that, or is it validating for her to hear the reason why she reacts differently from other kids?

Thanks for any thoughts!

[crunchy_mommy]

We don't have an official diagnosis, though I'm quite sure he has SPD... but I don't tell anyone about it. It helps that he can 'pass for normal' because of the way he reacts (inwardly, not outwardly, to generalize it). I have one friend (and her DH) that I've discussed it with, just because she's a close friend and I needed someone to talk to about it, especially when we were in the middle of the EI eval. I felt comfortable with her because not only is she a good friend but she's one of the least judgemental people I know, least likely to stereotype or box in someone...

Especially because DS is so young, I just don't want SPD to become part of his identity. Maybe he'll kind of grow out of his issues, maybe OT will help him overcome or cope well with them, maybe he'll be like me as an adult (I still have major sensory issues). But right now, I just make excuses for him, and he's a toddler so it's socially acceptable, even expected, I think, that he doesn't like loud noises or being touched etc. All our close friends/family know how he is because they've known him since he was a baby, so I don't see the point in labeling it right now... and I don't feel the need to talk to strangers about these things. I'm pretty guarded around strangers anyway so we just don't seem to have the kind of overpowering interactions in public that some people seem to have!! No one has ever really tried to touch DS or anything...

Oh and when I was little, whenever someone tousled my hair, I'd always jokingly say, "Hey, I'm not a cat!!" and that got people to back off. Of course, we didn't have diagnoses like SPD back then, so I guess I had to get creative.

(Obviously I don't think there's anything wrong with you sharing your DD's diagnosis if that's what you want to do -- just sharing what I do!!)

[Stephenie]

I don't usually tell strangers unless DS is having a major meltdown and they start getting snarky with me about it or start asking questions etc. He also has Asperger's and sometimes it's pretty obvious that that something is going on. We've told people who deal with DS on a regular basis so they understand him better, and that helps a lot. But random strangers who think they need to touch him? I don't bother. Maybe they'll learn that touching people they don't know isn't appropriate.Sometimes I simply say "He doesn't like being  touched. Please stop," but that is as much as I feel a stranger needs to know. 

[Linda on the move]

Originally Posted by lisavark 

Would you tell a stranger or new acquaintance what's going on when DD gets upset because they touched her?

I don't think that strangers or new acquaintances should be touching kids! 

I'm a survivor of childhood sexual assault, and when my kids were small I was fine putting a STOP to people touching my kid. What the heck is that about anyway? So for me, that part of the question doesn't have anything to do with special needs. Strangers don't get to touch EITHER of my kids. Actually, people I know and love don't get to touch my kids either unless my kids are in touchy place. No forced hugs, no "go give grandma a kiss."  None of that crap.

Back to your real question -- my DD has intense sensory issues as part of her whole autism package, and over the years I've been selective about who I tell. There are some people that I'm very open with, and some people that I'm not.

Not everyone will be as understanding as your friend. Some people don't think that sensory issues are real. Although it isn't a secret, it is personal information. I tell people on a "need to know" basis.

A lot of times, less information works just fine without the label. For example, DD never liked rides like merry-go-rounds and such. Rather than saying she has SPD, I just said that she doesn't enjoy rides at this age. It's less permanent. It's just respectful of where she is right now. It's not saying that how she will be later. We got pressure to make her do things that other people find fun, and I spent time explaining that it wasn't *fun* for her, it was just scary.

[joensally]

I agree with Linda.

It's your child's info, and she lives in her community and needs to be comfortable with her "rep."  My son is 8 and is quite sensitive at this point about what others know about him.  He's very aware that he has SPD, and at some points has been pretty open about it.  In fact, he went through a stage at 7 where he was grieving it and when something would happen he'd cry about how was he supposed to live with SPD? 

DS has some tactile defensiveness.  He's a boy, so with other adults it's frequently a firm pat on the shoulder, which DS hates as he hates unexpected touch AND it's usually pretty firm patting.  What's worked if we haven't avoided it is to say "he's not a fan of that" or "I think you surprised him."   When he was younger I sometimes sort of tucked him either in front of me or behind/beside me.  Sometimes I'd say things like "oh, you know kids, they have their ideas!" in a positive tone because it's sort of socially graceful in that it doesn't embarass either party - keeping in mind that DS and I have talked frequently about what he likes and doesn't like and that I respect that about him.

For people we see frequently that are going to notice the pattern, I may mention that he has sensory issues, or that he's intense and sensitive, so that they know we know something's going on and don't think we're failing to help our child, and are maybe more patient with him.  DS was pretty out there at 4 and a number of people in DD's school community ended up knowing because the pattern was pretty apparent every day at the playground :).

[SpottedFoxx]

Another survivor who agrees wholeheartedly with Linda.  It's your child's body and no one should touch it unless they are a friend or family member.   If your child doesn't like being touched at all, then you need to stop anyone and everyone who tries to touch your child before they can do it and simply say "please don't touch my child, they don't like it".   If they are a close friend or family member and you want to share they have SPD, fine.  However, it's not necessary.

I don't even explain it when I get snarky looks when DS is having a melt.  Kids melt - SPD or not.  You want to give me a hairy eyeball?  Who cares, it's not like I know you or care about you.

[Kristine233]

I have to agree that strangers and new people really have no place touching a kid anyways.

Do I tell everyone I meet? No. A simple "He doesn't like being touched" should be sufficient and if someone is offended by that its their problem, not ours. Friends and family are a different situation and we do tell them because they are important to us and we want them to understand our children.

[Kristine233]

Originally Posted by SpottedFoxx 

You want to give me a hairy eyeball?  Who cares, it's not like I know you or care about you.

Yes! I remember when my oldest was a baby she screamed all the time. She had really bad colic. I couldn't stop life just because of this. I went shopping and went about my business like I would any other time. She was FINE, well taken care of, snuggled, loved, the works. Unfortunately you may not have known that by hearing her cry. My sister was embarrassed and said "People are looking" I replied "If they are a mom they probably understand, if they don't understand then I don't care what they think anyways." When it came to my SN kids it was the same way. You grow a thicker skin and stop caring about what other people think about your parenting. Its irritating when people don't understand, but you brush it off and move on. There are far more important things in life!