Recently it became obvious to me that special needs parents often speak to each other in code. I suppose it has always been around and is often used in medical support forums where everyone is speaking the same lingo.
You know it. It’s the shorthand: Neuro, Pulmo, CHD, Mito, OT, PT & CI, just to name a few. I guess I have been so immersed in, what Ellen calls ‘the sisterhood of the special needs child‘, I never realized we were speaking a whole different language.
Actually it is not just special needs parents, nearly every group has their own lingo; SEO, LOL, DH, FB…abbreviations are everywhere.
Now granted, not every special needs parent will know and use the same lingo, that is to be expected, as not all SN kids are created equal. What I did not realize is that the use of this shorthand was somehow bothersome to others, who do not have a SN child or background.
Because personal life often spills over onto social media sites, like Facebook or Twitter, occasionally someone will use SN lingo. No worries, those that understand will comment or answer the question at hand. Generally, those that have no idea what the person is saying will not comment on that particular conversation, or offer some other kind of support. ((HUGS)) are always welcome.
Lately, I have noticed quite a few “I have no idea what you mean” “what are you talking about?” “you lost me” type of responses. Huh?
To be honest there are tons of conversations, on Twitter in particular, that I do not enter into if I am not knowledgeable about the subject. I take no offense to those who can chat about being frugal, going green, or Justin Beiber. These are topics I am not familiar with. I assumed that was the natural ebb & flow of social media conversations. Apparently that is not always the case.
I was interested in what other SN moms had to say about this so I posed this question to my blog community.
Do you ever find that typical moms do not understand your SN lingo?
I received such honest responses. Without hesitation, Kristi Pena answers, “DEFINITELY.” She admits to saving such conversation for other SN moms online, because often she feels like an alien speaking another language with her family. Welcome to my planet Kristi!
Ah, people who understand. The consensus seemed to be that those belonging to ‘the sisterhood’ are comforted in sharing a secret language.
We connect. We comfort. We accept each other.
But I think Barb Dittrich said it best, “Not having to explain terms & language is what makes our bond as mothers of kids with special needs unique. We bring one another comfort simply by knowing what the other is talking about. What a gift!”
I have to agree. It is a gift to be able to connect with and support other special needs parents online and I plan to keep right on doing so. That’s what I love about this community; someone who understood ME was able to put something that was really bothering me into perspective.
It turns out our language is not so secret after all, it’s called support.
Janis chronicles Austin’s life and medical journey at Sneak Peek At Me. She is an advocate for medically fragile children and families living with a rare disease diagnosis.
Who is Justin Beiber?
I use DS alot – but not for ‘dear son’, or ‘darling son’. I don’t even have sons. I use it to mean Down syndrome – because my daughter has Down syndrome.
I also use EI (Early Intervention), ECSE (Early Childhood Special Education) and SLP (Speech-Language Pathology).
Thank you for the lovely post. I suppose I hadn’t realized it either but I do use all those terms and more like SOD (Septo Optic Dysplasia, the rare disorder my son has) ONH (optic nerve hypoplasia) but it’s funny because even when I type out the entire term people still don’t have a clue what I’m talking about and I have to launch into a huge explanation. Sometimes I just cop out and say “My son is blind and has hormone deficiencies” instead of telling them all the details.
I couldn’t believe it when a mother of a kid with learning disabilities didn’t know the term IEP. How can you not know what an IEP is?
I love this post. I meet up with a group of mom’s once a month for dinner. We all have disabled children, and we throw around terms like EPSDT, PT, OT, IEP, etc. It’s great not to have to stop and explain what you are talking about. These monthly dinners are priceless to me!
Justin Beiber: a teeny bopper heart throb/musical genius from Canada who has a very faithful following on Twitter. His name is ALWAYS trending. (I had to look him up too.)
great job Janis!
( I didn’t know who Justin Beiber is either,lol I bet my 12 yr. old could tell me though!
We have a group of mom’s that get together monthly too, all with SN children. We all always walk away saying, the best part about our dinners together, is we rarely have to explain anything. We don’t have to sit back in the conversation and let all the typical children rule the conversations, as with all our other wonderful friends. It’s just different, and much needed.
I like this post my favorite part is the end,
“it turns out our language is not so secret at all, it’s called support”
YUP! LOVe this!
Great post, Janis! Sometimes I’ll say something like “Max’s OT” and get these blank stares. Oh, and I just don’t get the whole Justin Beiber craze, I guess that makes me officially old. Although I do understand Zac Efron mania, he is cute!
I agree! And I also enjoy getting to take a break from educating people about autism. Don’t get me wrong, I think it is a good thing to help people be more understanding and tolerant – but there are days when I just want to go to the park and enjoy it, without having to explain to 5 people what he is doing, and why, etc. etc. I love being with people who understand, and who share what is “normal” for us.
Janis, you hit the nail on the head! Perfection in a post! Love it!
If it is OK with you, I would like to add this post to my Special Needs blog. I will totally give you all the props and links back to your site!
Thanks again!
Pattie
I have a kid with dyspraxia, among numerous other “conditions”. My friends and family often have to stop me from my SN speak.
[...] In order to demystify my world a little bit I am about to crack the code let you in on some FAQ. I realize Special Needs (SN) parents speak and write in our own lingo. [...]