Nonverbal/Partially Nonverbal?

arkowalyshyn

Thanks for the reply!

We like to think our kids know they are perfect the way they are, but every one is always learning, and sometimes we learn things differently (thats a great thing!) Our kids use indirect echolalia, and most of their scripts are being transferred to very appropriate situations, so the words in context are a very welcomed thing. We use proloquo for speech, it uses PECS (pictures/symbols with labels to anyone reading that is unaware) and choice boards with voice output. She is up to 3-5 word sentences for requests. We have incorporated some simple signs for a limited number of situation (stop, all done, thank you, and I love you). They do seem to make a quicker connection to meaning with it

My biggest issue is trying to assist in areas they are still working on. I hate to see them struggle and so incredibly frustrated by things that come naturally to others. Every time one of my babies is overwhelmed or "acting out", all I can think is, it's this unpleasant to watch and experience, can you imagine living it? I know I need to let them struggle some, and teaching new skills is hard on all of is, but better for them in the long run. Its hard sometimes not to take the easy way out or shortcut when I can just do for them.

Out of curiosity, and please don't be offended that is far from my intention, are you "visibly" different? For example, my 11 year old appears very typical, and his quirks arent apparent until you talk to or spend time with him. My 9 year old, most people can see right away she has some extra needs, with her noises , how she carries multiple things around, obvious lack of eye contact, rocking. The 3 year old is small, so most assume she is just younger or inattentive. She does love to spin, babble and carry a dangling thing around, looks around a lot, including at people. Everyone is so different. I guess Im trying to figure out which of my kids you are most like! Pm me if you like. My posts are getting too long.

ShaleSelkies

@arkowalyshyn I'm sorry for the late reply! I'm so glad you're such a supportive parent and you've educated yourself on all this though and are willing to work with different communication methods and the like that honestly makes me so happy to hear (though I'm sorry if that sounds strange it's just... unfortunately rare that I've met someone like you).

I certainly get how that'd be frustrating, I've pretty much always been in the end of being the one with the issues but in other contexts I have been in situations where say one of my friends is having issues with something I don't really get the feeling of and it's really hard to have to watch and not be sure how you can help at all. Hurts, that is, and hurts more knowing how they must be hurting whatever the context happens to be. Either way as I said if there's anything you feel like I could help with in this feel free to ask, though of course being different from and not knowing your kids my insight will be limited.

Well I certainly don't make eye contact often, though now if I've figured out that looking between someone's eyebrows will make it look like I'm making eye contact if I need to give that impression (job interviews ugh). Otherwise I send to look around a lot at different things during conversation or fixatedly on one if I'm thinking particularly hard - I also have a tendency to be pretty animated in leaning around a lot and bounding on my feet expressively or just while looking at stuff, moreso the more I feel comfortable with a person or in an area.

I make noises a lot, though most often just as a form of expressing my current emotions or a low hiss sometimes as a sort of white noise in situations when I'm say trying to work on a maths problem. I rock, more thank I know since apparently I do it unconsciously a lot - moreso side to side than forwards and back but that's in part linked to what kind of chairs are around the college. When trying not to for whatever reason I'll usually kick or shake my legs but really I much prefer to rock. I flap and bounce when particularly excited and I flap a little when anxious too or do this thing where I tap usually at my collar bone or on my thumbs with my middle and pointer finger - very fast sometimes I'd probably be good at those 'finger race' phone games so many folks were doing a little while ago. I also raptor hands apparently more than I know and often won't even realize I'm doing it until it comes to mind or something/someone brings it to attention.

I have several stim toys I carry in a nice soft pencil case, and I usually carry my backpack around for my art stuff anyway so folks don't really notice because things are in there (I always wear my favorite chewable necklace but it's just a nice yellow star charm and people don't usually even realize it's meant to be chewable until I tell them). I used to take other comfort items such as toys or particular clothing items around with me everywhere and still have periods where I do but not so much anymore, though there are things like certain pictures on my phone and the like with which I do similar so I guess in the end I just ended up with a wider variety of what I could feel comforted having around.

And there's more but those are just the most common things I do really.

arkowalyshyn

Thats great. My girls have 'chewlery', though their pendants are an elephant and an oreo cookie. They dont like it around the neck, but love to swing it back and forth. Sofia always has a "friend" or usually 2 (once it was a Styrofoam egg. It came to swimming lessons......) Everyone flaps and rocks, to various degrees, depending on amount of emotion. Sofia is starting to ask for tickle hugs, (a made up squishy/tickly situation we do) so exciting that she is putting words together. I do wonder if you have any advice for dealing with anxiety or negative self talk? My son is verbal, but very extreme with his reactions. If he isnt 100% sure of something, or learning something new, starts with a flow of "Im stupid, why am I dumb, my brain is broken". We try not making a big deal about it, and not to say that it is bad or wrong to do (that "proves" his point to him). We are trying to get him to find 3 positive or good things about himself or even just his day. Any strategies you have come across that may be useful in this situation?

Luke_I_am_your_spotter

ShaleSelkies wrote: »

Just out of curiosity I was just wondering if anyone else here happens to be nonverbal or primarily nonverbal? I can't speak the vast majority of the time and generally it's just exhausting or even painful for me and while this doesn't exactly affect diet and the like (outside of social aspects of fitness) it's just nice to know if I'm not the only one! :^0

Note: this is not a thread asking for advice on medical causes or similar - I already know and I'm fine this is just how I am!

It's nice of you to reach out. While I, myself, am not on the spectrum - I do advocate for the rights of children diagnosed with Autism Spectrum Disorder. Possibly Autism Speaks has a discussion forum for you to discuss this with more people who can relate to you. You are right- you are not alone. You seem like a very bright, intelligent woman and I wish you all the best!

ShaleSelkies

Luke_I_am_your_spotter wrote: »

It's nice of you to reach out. While I, myself, am not on the spectrum - I do advocate for the rights of children diagnosed with Autism Spectrum Disorder. Possibly Autism Speaks has a discussion forum for you to discuss this with more people who can relate to you. You are right- you are not alone. You seem like a very bright, intelligent woman and I wish you all the best!

Actually... I'd rather not touch Autism Speaks with a ten foot pole and a biohazard suit. Generally I don't tend to like hate groups or people who believe and teach people like me that we shouldn't exist in general and, well, I'm sure you mean well and are nothing like that personally but you can do a quick google or ecosia search on 'why is autism speaks bad' and you'll find more info on what I'm referring to. Please don't support them.

Luke_I_am_your_spotter

ShaleSelkies wrote: »

Luke_I_am_your_spotter wrote: »

It's nice of you to reach out. While I, myself, am not on the spectrum - I do advocate for the rights of children diagnosed with Autism Spectrum Disorder. Possibly Autism Speaks has a discussion forum for you to discuss this with more people who can relate to you. You are right- you are not alone. You seem like a very bright, intelligent woman and I wish you all the best!

Actually... I'd rather not touch Autism Speaks with a ten foot pole and a biohazard suit. Generally I don't tend to like hate groups or people who believe and teach people like me that we shouldn't exist in general and, well, I'm sure you mean well and are nothing like that personally but you can do a quick google or ecosia search on 'why is autism speaks bad' and you'll find more info on that.

I've found the group to be nothing but positive for the people and families I advocate for. I did mean well...autism is an issue I hold near and dear to my heart. Do what works best for you. Everyone is different. I wish you luck and hope you find what you are looking for.

ShaleSelkies

Luke_I_am_your_spotter wrote: »

I've found the group to be nothing but positive for the people and families I advocate for. I did mean well...autism is an issue I hold near and dear to my heart. Do what works best for you. Everyone is different. I wish you luck and hope you find what you are looking for.

Then you aren't seeing a lot of what they have been doing and the effects they've had - it really isn't just an issue of just 'everyone' is different I'm afraid people have been hurt and killed because of what they promote. Maybe you happen to have some nice people in your area, but I would urge you to talk to the larger autistic community and research further into this. Maybe organizations which actually have autistic people in meaningful leadership positions like the Autistic Self Advocacy Network, unlike Autism Speaks.
That's all I have to say really. What your next step is is ultimately up to you.

ShaleSelkies

arkowalyshyn wrote: »

Thats great. My girls have 'chewlery', though their pendants are an elephant and an oreo cookie. They dont like it around the neck, but love to swing it back and forth. Sofia always has a "friend" or usually 2 (once it was a Styrofoam egg. It came to swimming lessons......) Everyone flaps and rocks, to various degrees, depending on amount of emotion. Sofia is starting to ask for tickle hugs, (a made up squishy/tickly situation we do) so exciting that she is putting words together. I do wonder if you have any advice for dealing with anxiety or negative self talk? My son is verbal, but very extreme with his reactions. If he isnt 100% sure of something, or learning something new, starts with a flow of "Im stupid, why am I dumb, my brain is broken". We try not making a big deal about it, and not to say that it is bad or wrong to do (that "proves" his point to him). We are trying to get him to find 3 positive or good things about himself or even just his day. Any strategies you have come across that may be useful in this situation?

I've seen those pendant types before! I'd actually really like to get the oreo one sometime it sounds really nice. I'm glad your kids like them too then!
Aa that's a bit of a hard one since honestly it really depends on why he's doing it in the first place? I think something which has helped me a lot in self esteem has been to be shown that everyone has issues doing various things and learning that one can't in fact be 100% certain about anything. And generally shades of grey! Not just in things like games but in morality, art, maths and subjectivity as strange as it sounds were major things which has helped me notice and avoid that kind of cycle for me.
As I said though I think that stuff really depends on why it's happening - for me a lot of my issues were due to that for a long time I was bullied to the point of thinking that I was just 'too stupid to read or write' and it was ultimately just having my sister be genuinely excited about a story I'd come up with in a road trip which set the ball rolling for everything else. I think in general what you're doing so far sounds like a good idea though - does he have much of a community outside of your family or anything? If not that can help too to help one feel less different from everyone which while not wrong can feel like it is at that age.