Hi, I have some questions if that's okay. I know you may not have the time, energy or knowledge to answer this. I completely understand that. If that's the case (or even if you simply just don't want to answer, I completely respect that too), could you please point me to someone who might be able to answer if you know anyone?
I live in the UK for context. And I've got a step sister who is 7 and doesn't speak often. She technically can but she won't if she doesn't have to if you get what I mean.
She talks a little but she much prefers using my tablet (I'm autistic and an AAC user myself) and she even has her own cheap speech pad her dad bought her that she uses (but there aren't many words on it as it's one of those 20 quid ones) until him and my mum can afford to get her her own tablet for AAC (which will be a while seeing as they don't get DLA for her, due to the fact she mainly lives with her mother who refuses to acknowledge she's probably autistic and definitely has some form of speech difficulties, so they'd have to pay out of their own money).
She also uses emotions cards to convey emotions instead and they've helped (they also help her brother of a similar age who we suspect has ADHD). And now that she's getting older and better at writing and spelling things, she's writing stuff down instead of talking.
What I'm wondering is:
A. how do I tell what level of verbality she is? After all, she's far from nonverbal but she's just as far from fully verbal too. I'm suspecting semiverbal but might be wrong. Honestly, this one is more so we know what to put on lanyards for her when out and about so people we interact with are aware
B. how can we help? She is picking up symbol based AAC very well for now but we don't get to see her as often as we'd all like (her mother is starting to withhold her and her siblings from their dad but that's another can of worms we're trying to deal with) so we don't have a lot of time to model it to her. Also, she doesn't get to use AAC at all at home. Her mother won't even let her have her flashcards or her little pad...
Again, if you can't or don't want to answer, I completely understand. But if that is the case, I would appreciate it if you could point me towards someone that can. If you don't know anyone that's also fine.
Trying to help out a probably autistic and possibly semiverbal 7 year old girl without a speech therapist or accommodations for her at school or her home is just quite stressful as you can probably imagine. It's a lot of "am i doing this right???" for me, my mum and her dad (my stepdad). So just trying to find ways to help and make sure we are doing it right.
hi anon!
i appreciate you reaching out!
i don't want to presume anything, but at the heart of this ask, i personally hear someone trying to support their loved one through a harrowing time. i can't answer this ask like an authority, but i can answer it like a friend:
i am so sorry to hear about what y'all are going through. what your step sister is experiencing sounds crushing and isolating, and it must be painful for you as her step sibling to have so little control to help, especially with her mother stopping her from getting the support she needs.
it also sounds like you are doing good work already, right now. it is incredibly generous and compassionate of you to let her borrow your AAC device, and the fact that you know that she prefers to use it (and everything else you told me about her) also shows how attentive and caring you are to her. you know all that, and have done all that, and y'all don't even live in the same house. that absolutely makes an impact, despite how little leverage you may personally have on the other (incredibly fucked up) factors at play here, as her sibling, you are in her corner.
in the meanwhile, until she gets the supports she needs to thrive (and i pray that's a very short meanwhile), just keep being a loving step sibling. let her be all that she is, and all that she wants to be for as long as you're able. you already seem to do that very well <3 (heart).
lastly, i humbly submit to you that it sounds to me that you already knew exactly the best thing to do for her given your situation and the amount of control you have, especially given that you weren't expecting me to answer. i don't have the credentials to tell you what you're doing right or wrong, but i know love when i see it. (or, read it, anyway.)
i hope you don't need me to tell you this, because i know it means more to hear it from people who know you and love you, but you sound like a wonderful step sibling. i can only speak to what i observe, but if i can feel how much you care about your stepsister across an ocean in the span of 519 words, i reckon she can feel it too.
i hope something good happens to you and your family today, especially your little sister. please don't hesitate to reach out with anything else, and if i have grossly overstepped myself in the way i answered your ask, i humbly beg your pardon, and hope you'll forgive me.
chrome
ps - i hesitate to bring this up, because 1. i don't know how UK disability services for children works and 2. you would not be in my inbox if this worked - but i know of several folks in the states whose autism testing and relevant accommodations and speech therapy (including providing a high tech AAC device) was handled and paid for by their public school. if your stepdad can get her school to intervene, they may be able to do more for your step sister than just y'all as a family alone. if this isn't relevant to y'all for any reason, please feel free to ignore it.
pps - i don't think her verbality matters for the context of her lanyard. i never heard anyone say semiverbal outside of social media*, and most people (that i know of, anyway, i hope its different for y'all) don't know what it means. imo, it would be more effective to just have "i struggle to communicate" or something like it. in my opinion, it would be more effective to state her access needs instead, at least until that's widely used.
*i really hope that changes someday! i think it would be helpful for as many folks as possible to be able to have the words for their experiences.
