"What's wrong with your kid?" What responses do you give?

I had this negative interaction a few weeks ago and it really got me thinking about how to handle explaining my son to others (that frankly have no business in our lives) what is indeed noticeably different with my son.

I was buying balloons for my boys and Chase my little SPD wonder was actually behaving really, really well. I was so proud of him. He was on his monkey leash and his gross motor skills are awkward and his speech is delayed, so I'm sure he was looking a bit remarkable. The sales lady asked, "what does he have?" I honestly thought she was talking about the monkey leash so I sort of stood back from him [thinking: get an eye full lady]. But then she clarified, "does he have autism?" well he doesn't, but he does have SPD and perhaps other things yet TBD. Anyway, I asked lots of people, what should I say? I don't want Chase to be defined by SPD. While I'm pretty cool embracing it as a component of his life, it is not the only factor by which I'd like to describe him.

My father suggested the answer, "He is the gift of patience" and I've since decided that pretty much summed my sweet boy up.

But how do you get around talking plainly about the truth without sounding insulting? You know you're having the conversation with the mom sitting next to you at T-ball or at school pick-up... these things just come up. I super up-front about our struggles and successes without little ears around, but with Chase right there... I just hate having conversations about him, in front of him.

What lines have you used?
How much do curious strangers deserve to know?

what i respond depends on whos asking. I have even called people on the carpet for being rude, or even contacted a manager for their calousness.

i have also educated people who all they know is your normal or you have autism. that is not the end all be all of life, there a millions of issues

I have joked, by saying sorry he hasnt had his coffee yet... they think im joking, but im really not as coffee mellows him out. but they think im just funny

and sadly i have even lied my son is 4.5 and i will say he is 3 ( the few times i have done this its been at a park and the kids are looking at him funny and even asked me HOW old is he... when i say 3 they play with him like he's "normal" but if i tell the 5 year old whos asking hes nearly 5, then they will avoid him and tell him to go away when he comes near..

i really dont have a set phrase... wish i did but with 2 with SPD and they are both SO diffrent the issue could be 1 of 1000 that is drawing attention.

This only happened to me once (so far), and I answered, "Her central nervous system doesn't work properly. It's called sensory processing disorder." The question was from someone I knew, however. If a stranger did it, I'm not sure what I'd say after I picked my chin up off the floor and the steam stopped coming out of my ears.

I have had a few people in stores and such approach me and ask "Why do you allow your child to misbehave like that?" or better yet "Why is your child so out of control?" I have found that when total strangers approach me with these questions, it is VERY hard to stay calm. However, I find a way to gather up my words and I simply respond with, "Her brain does not process things like a typical person does, it is something called Sensory Processing Disorder." Sometimes I get a few more questions inquiring about SPD, other times I get blank stares and they walk off. There is a site that actually makes SPD cards that you can hand to someone when a stranger asks about what is wrong with your child.

http://www.sensorystreet.com/free_downloads.html

I also found that keeping it to a minimal explanation works the best Hope this helps you out!

(08-14-2012, 11:50 AM)Heather Wrote: I have had a few people in stores and such approach me and ask "Why do you allow your child to misbehave like that?" or better yet "Why is your child so out of control?" I have found that when total strangers approach me with these questions, it is VERY hard to stay calm. However, I find a way to gather up my words and I simply respond with, "Her brain does not process things like a typical person does, it is something called Sensory Processing Disorder." Sometimes I get a few more questions inquiring about SPD, other times I get blank stares and they walk off. There is a site that actually makes SPD cards that you can hand to someone when a stranger asks about what is wrong with your child.

http://www.sensorystreet.com/free_downloads.html

I also found that keeping it to a minimal explanation works the best Hope this helps you out!

heather, thanks for the link! You know I was actually thinking of typing up a small card to get copied just in case someone really wanted to know.... I totally welcome the observation that my boy is "different" most noticeably is his lack of calm. He never stops moving. So while other kids sit and play on mommies ipad while their big brother is at Tae-kwon-do... mine needs to run back and forth up and down the hallway the entire time. The suggestion to sit or hold sit sends him in hysteria. It makes people notice him. Anyway, it is a difficult balance to walk between educating the public (the well-meaning public) vs. explaining a "disorder" in front of my boy which I think reads like "oh, he's deficient because...." I want him to have the message, "he's outstanding in spite of...."

I love your dad's answer-a gift of patience. Wow! I actually even haven't told all of my family yet, I don't think some of them will be understanding. I haven't had any strangers ask me but we are going on vacation soon and I've seen those cards in the link above. They are great. I'm going to get some for the trip, especially the plane ride! My son is over responsive to stimuli so he often has meltdowns in public and people look at me like he is a spoiled cry baby (even some of my family). So I want to make up my own cards that say my son is not a crybaby he has SPD... I'd also like to make him a t-shirt that says "don't look at me, don't touch me, don't talk to me, and please do not tickle me!" But he is so tactile defensive he probably wouldn't wear it! I like the one post that said the central nervous system doesn't work properly. I've heard others say it's a neurological disorder. I think the hardest part will be to explain to my son eventually what is "different" about himself-will I say to him you have a neurological disorder? I haven't figured that out yet.

There are several good children's books about SPD. Maybe that would be a good way to begin introducing it to your son. Here's a link to a list of children's books:
http://www.sensorysmarts.com/toys_and_equipment.html
Then click on "books for children"

Hi! I am a child therapist, and from my experience, kids have an easier time understanding their differences if you talk to them about it upfront from the beginning and normalize it. You can explain that everyone has things that are easy for them, and other things that are hard and that they need more help with. Give examples!!! - sports that challenge you, things you can't reach on Thr grocery shelf, sister needing glasses, a relative on insulin or oxygen, read books about people with disabilities who succeed in spite of them, etc. This normalizes this and teaches compassion. Tell them that their brain has a hard time with sounds or lights or movements, and that sometimes they need extra help (therapy, blankets, calming activities, etc) to deal with those. Talk about things that are easy for them and their strengths as well!!! When they get overwhelmed or have trouble with an activity, tell them that their brain needs a little extra help and use a strategy. Model this with your own emotions or limitations: wow, I am feeling angry that that car cut me off. Im gonna take some deep breaths to calm down. Or - baby brother can't reach that and needs extra help. Let's get him a stool to stand on. If they hear about it like this, it becomes part of who they are and part of humanity. Everyone has struggles and limitations; spd is just more visible than some things. Also highlight strengths and perseverance - you really were brave to use your blanket to calm down when that loud noise started to make you feel panicked. Teach and use and model feeling words! The thing is, children know when they are different. You don't have to tell them. But talking about it openly and as normally as if it were talking about the weather takes away the shame and confusion. They understand and become more confident. This takes away some of the power of others who gawk or are rude. Blessings to you. He is lucky to have such a caring momma.

Seabird, I am SO glad you posted that because that is mostly what we have done with our son, and its reassuring to know we are on the right track. He has been in school with a boy with an asd since 4yrs old. We always explained it to him as B.'s brain working differently and not being able to control his behaviour or understanding how to acts with people etc. Another friend of his has speech & learning difficulties & we explained that in the same terms. We all have different brains, different bodies etc. My son is gifted so he already understand he is"different" so talking to him abt spd will be deadlt with in the same way. It probably helps that I have a spinal injury & he has only known me as unable to do so many things. Different is the new normal!

As for strangers, depends what mood I'm in I guess I've only ever had one comment, when he was 18months old & having a meltdown in a department store. An old lady came over, looked him right in the face & threatened to hit him with her cane!!! I was so gobsmacked I couldn't answer.

I like the idea of the cards. Looking that up now.
-Sharon

Ignore the ignorance and take it as a way to help educate someone. I have business cards that I made that I hand out to people like that. I have had someone ask me "What's wrong with him" this was at Petsmart I was livid. You take my son in a pet shop and he gets so excited he can get a few feet off the floor with the hand flapping! lol I was really mad at her I actually reported her and explained it to her manager so the information can be shared. Otherwise I explain what he has. I don't want him ashamed, hey he has super powers you don't! He can hear things you can't, he can smell things you can't, he can definitely run faster then you! He is superman!!!!! I have a book I made for his brother when he was younger trying to explain it to him, and I named it Super Power Disorder (SPD) I drew a cape on him and made it like a super hero book with tid bits of why. Maybe some people need it explained to them like they are children as well. Don't let it get you down we have got some really awesome kids those people are just jealous!