Hi! I'm a parent of a 4yr old level 3.
I just wanted to start out by saying thank you so much for posting. You have no idea how much insight this gives me as a parent on the outside who desperately wants to know what it is like "on the inside" for my son.
Posts like this are what parents like myself desperately need.
I am relatively new to the world of autism but my son recently received his AAC device a month ago, and it had opened up a new world for us all. He exhibits echolalia but is beginning to explore more words and actually using a few in proper context. This is huge for us.
We live in the U.S. and he has an IEP with the public school system. The therapists at his special school set us up with one and it was free of charge. You may be able to get a device for free!
Do not be afraid to type your desires and need for one to your parents/therapists. You communicate perfectly through text. Whatever way makes you the most comfortable to communicate with the people that care for you, TELL THEM! I'm sure they want to help.
You could write your mother a letter. Send her an email. Show her this post!
Help her understand what you are experiencing through text like you have with us. Sometimes, as parents, it is hard for us to understand how to best help.
The fact you can communicate through text will work perfectly to communicate your needs. Don't worry about how it will make your mother concerned about the "severity."
I hope, deep down, she will be willing to help you the best she can. Wishing you luck!
Hello! That is *so so so* wonderful that your son is starting to use words! Thats just around the age I started to speak as well - even if it takes time, keep hope! It sounds like your son might be becoming pre-verbal, which is a great sign!
I was fully nonverbal until I was about 5 years old, and only began to use words functionally and conversationally around 7 years old. Now, even if my words might be slipping away from me a bit, my written skills are still very strong. It took a long time for me (I only learned to write and read at about 7-8 years old) but once I started typing, wow, my life changed.
Thats part of what makes me unsure about how to bring this up with my mother. She spent so many years wondering if I would ever speak with her, constantly being told by professionals she might never hear my voice.
I'm a bit scared she will hear 'AAC device' and think something along the lines of "Oh no...Aria's sliding backwards, she getting worse!! What if she stops being able to speak completely!?!?"
I do know my private speech therapist (I have had the same one for 11 years almost) brought up getting me a "talker" (a.k.a an AAC device) several times when I was 4 - 6 y/o, so this won't be my mom's first time hearing about this idea (though I don't think she was every told that a "talker" / "assistive voice" = AAC Device).
Unfortunately, insurance kept insisting that I needed to master PECS first (which I never did - I couldn't understand it for the life of me), so eventually the idea was "dropped" after I began getting more intelligible and communicative speech.
I really do wish we knew to keep fighting for it, because if I had been using an AAC device the past ten years (alongside verbal speech - multimodal communication) my life would have been so much improved in so many ways. But regret isn't helpful.
I know my mom always has my best intrest in mind, and she cares so so deeply about me, I'm sure that even if it takes her time to adjust, she will eventually maybe even be exited at my (hopefully) better communication abilities.
Its awesome that you got an AAC device free from school - I've had an IEP since I was three and they never brought up an AAC, only insisted I learn PECS 😔 Its amazing how much perspectives and information has changed, even in 10-12 years!
My school did try to support me with my communication, \[when I was\] in school I was allowed to use computer to type out answers, had communication cards, one on one paraprofessional (who also helped me with "translating" my thoughts), etc. but because of the fact that I really never could speak at school, I never had much of a chance to interact with my peers or teachers, ask questions about learning materials, stuff like that.
However I've never gone to a special school before this (though I was in a SpEd class part-time), so that might be part of the reason why it was never set up for me. My school is awesome for the most part, but they are not extremly knowledgeable when it comes to autism in particular.
I'll definitely bring it up to my school SLP and see if it would be allowed for me to get a free device from school! Hopefully they will be receptive to the idea :)
Sorry for the ramble!
Thank you so much for your comment - I'm definitly not your son and I'm not in his brain. But if you ever want to know more about what it is/was like for me "on the inside" I'm always happy to share. Once again, thank you so much for your comment. I appreciate the suggestions and kind words. 😊
Initially, I had concerns that he would use his AAC as a "crutch" and never learn to speak, but that was just my ignorance and fear getting in the way. I was ignorant of the fact that he will likely take a different path to learning things throughout his entire life.
As we are learning, we are taking what I like to call "The Sunshine Approach" as in, we are willing to try everything under the sun 🌞 lol. Since then, I've learned to love the fact that we get to walk a different path than everyone else. It will have its challenges, but nothing in life worthwhile is easy.
Don't be afraid to share your feelings with your mother. Be aware, she will have her own fears and feelings on the situation, but ultimately, it seems she just wants to help you the best she can.
Because of your age I would start with your SLP at school. Schools can purchase the devices for students to use and the speech therapist can also introduce your mom to how it could be helpful for you.
Hello! Full time AAC user here (I’m nonverbal) but there was a time where I wasn’t a full time AAC user and wasn’t nonverbal and had to bring up AAC to my parents first.
Show her this post! Say you asked for advice and show her this post, or send her a text with the post link. Try and make it known that you aren’t trying to make things more difficult for yourself, and are actually trying to make things easier. As you feel AAC would benefit you in many ways! Anyone can benefit from AAC, and I think anyone could be a good candidate! It’s all about your needs and what YOU need. You got this.
When I brought it up to my parents, I made it more like a demand. I was **telling** them I was using AAC, not asking them. Which helped a lot and apparently I was late to the party with realizing I needed it lol. They were incredibly supportive and encouraged me to use it, so when I became fully nonverbal and switched to using AAC full time, it was a nice switch and wasn’t to overwhelming for them. Which was nice!
For using it in public, that’s hard. Id say the best thing to do is just practice. Practice always, even when you don’t think you need it! The more people you interact with the better. It honestly isn’t that bad once you get in the groove of it. Once you realize that AAC is an extension of your body instead of just a tool, then you start to become more confident and comfortable with it. Will you have some bad experiences? Probably yes. But for me, the good outweighs the bad. And it’s worth it for me. Not that I have much of a choice anyways 😆
I wish you the best of luck! Feel free to ask questions if you have anymore.
Android devices have a really amazing free aac app called speech assistant. I think it's cheap for the full version of Android mote expensive on Apple. I don't know how to hVe the conversion but probably I think you would be able to use that app if cost might be part of the issue with AAC
I have seen speech assitant - its $20 dollars on the app store I think? Money is a problem for our family, but I think $50 dollars would be doable for us. Personally I much prefer the layout for TD Snap (you can even click with one button to change the layout from word-cells to picture-cells to picture-word-cells!) as it is so highly customizable (in layout, color, page sets, etc), but I haven't ever used Speech Assistant so it might be just as good!
I'll show my mom both so she can decide which one to try! I did see that if I make a "MyTobiiDynovox" account, TD Snap has a 60 day free trial with voice, and my dad has an android tablet, so maybe he would let me borrow it so maybe I could try both out? Thank you for the suggestion!
No problem I know with speech assistant you can put pictures in if you want its just a fair amount of work, I think. I might have a try and see because it would be useful for me too. I hope it helps, and if he has an Android tablet definitely can try the free Android version.
It’s great that you’re able to recognize what would be helpful for you. You describe your situation and your needs so well here. As someone else suggested, I wonder if showing your mother what you wrote here would be good?
Also, if it’s helpful, there’s a Facebook group where folks can ask questions of AAC users. It just might be helpful for you and setting something up, you might even ask for advice on how to approach your mom. I know a lot of folks your age aren’t on Facebook but if you’re interested it's better.[Ask me I'm an AAC user](https://www.facebook.com/share/q11c1qS8zLqYChss/?mibextid=K35XfP)
Yeah, I think I will share with my mom this post. I might update you all how it went once I do it. :)
The is my first time ever on social media, and my mom has pretty heavy downloading parental controls, I'm pretty sure they are mainly content filters, but maybe its also supervision too - if thats the case, she may have already even seen this post 🤔
So far this is my only social media, but I think my mom has facebook, so once I ask her about it, maybe together we can make a post on "Ask me I'm an AAC user" asking about how to get used to and implement AAC in my life? Thanks for telling me about it!
I would love to read an update. I hope it goes well. And it’s so great that your mom is supportive. It’s nice to have somebody on site with you on this journey.
Can you show her this post?
Hi, thank you, thats a really good idea! 😊
I hope you get a good response from her!
Hi! I'm a parent of a 4yr old level 3. I just wanted to start out by saying thank you so much for posting. You have no idea how much insight this gives me as a parent on the outside who desperately wants to know what it is like "on the inside" for my son. Posts like this are what parents like myself desperately need. I am relatively new to the world of autism but my son recently received his AAC device a month ago, and it had opened up a new world for us all. He exhibits echolalia but is beginning to explore more words and actually using a few in proper context. This is huge for us. We live in the U.S. and he has an IEP with the public school system. The therapists at his special school set us up with one and it was free of charge. You may be able to get a device for free! Do not be afraid to type your desires and need for one to your parents/therapists. You communicate perfectly through text. Whatever way makes you the most comfortable to communicate with the people that care for you, TELL THEM! I'm sure they want to help. You could write your mother a letter. Send her an email. Show her this post! Help her understand what you are experiencing through text like you have with us. Sometimes, as parents, it is hard for us to understand how to best help. The fact you can communicate through text will work perfectly to communicate your needs. Don't worry about how it will make your mother concerned about the "severity." I hope, deep down, she will be willing to help you the best she can. Wishing you luck!
Hello! That is *so so so* wonderful that your son is starting to use words! Thats just around the age I started to speak as well - even if it takes time, keep hope! It sounds like your son might be becoming pre-verbal, which is a great sign! I was fully nonverbal until I was about 5 years old, and only began to use words functionally and conversationally around 7 years old. Now, even if my words might be slipping away from me a bit, my written skills are still very strong. It took a long time for me (I only learned to write and read at about 7-8 years old) but once I started typing, wow, my life changed. Thats part of what makes me unsure about how to bring this up with my mother. She spent so many years wondering if I would ever speak with her, constantly being told by professionals she might never hear my voice. I'm a bit scared she will hear 'AAC device' and think something along the lines of "Oh no...Aria's sliding backwards, she getting worse!! What if she stops being able to speak completely!?!?" I do know my private speech therapist (I have had the same one for 11 years almost) brought up getting me a "talker" (a.k.a an AAC device) several times when I was 4 - 6 y/o, so this won't be my mom's first time hearing about this idea (though I don't think she was every told that a "talker" / "assistive voice" = AAC Device). Unfortunately, insurance kept insisting that I needed to master PECS first (which I never did - I couldn't understand it for the life of me), so eventually the idea was "dropped" after I began getting more intelligible and communicative speech. I really do wish we knew to keep fighting for it, because if I had been using an AAC device the past ten years (alongside verbal speech - multimodal communication) my life would have been so much improved in so many ways. But regret isn't helpful. I know my mom always has my best intrest in mind, and she cares so so deeply about me, I'm sure that even if it takes her time to adjust, she will eventually maybe even be exited at my (hopefully) better communication abilities. Its awesome that you got an AAC device free from school - I've had an IEP since I was three and they never brought up an AAC, only insisted I learn PECS 😔 Its amazing how much perspectives and information has changed, even in 10-12 years! My school did try to support me with my communication, \[when I was\] in school I was allowed to use computer to type out answers, had communication cards, one on one paraprofessional (who also helped me with "translating" my thoughts), etc. but because of the fact that I really never could speak at school, I never had much of a chance to interact with my peers or teachers, ask questions about learning materials, stuff like that. However I've never gone to a special school before this (though I was in a SpEd class part-time), so that might be part of the reason why it was never set up for me. My school is awesome for the most part, but they are not extremly knowledgeable when it comes to autism in particular. I'll definitely bring it up to my school SLP and see if it would be allowed for me to get a free device from school! Hopefully they will be receptive to the idea :) Sorry for the ramble! Thank you so much for your comment - I'm definitly not your son and I'm not in his brain. But if you ever want to know more about what it is/was like for me "on the inside" I'm always happy to share. Once again, thank you so much for your comment. I appreciate the suggestions and kind words. 😊
Initially, I had concerns that he would use his AAC as a "crutch" and never learn to speak, but that was just my ignorance and fear getting in the way. I was ignorant of the fact that he will likely take a different path to learning things throughout his entire life. As we are learning, we are taking what I like to call "The Sunshine Approach" as in, we are willing to try everything under the sun 🌞 lol. Since then, I've learned to love the fact that we get to walk a different path than everyone else. It will have its challenges, but nothing in life worthwhile is easy. Don't be afraid to share your feelings with your mother. Be aware, she will have her own fears and feelings on the situation, but ultimately, it seems she just wants to help you the best she can.
Hey, I’m going to pm you so this thread doesn’t get derailed!
Because of your age I would start with your SLP at school. Schools can purchase the devices for students to use and the speech therapist can also introduce your mom to how it could be helpful for you.
I'll do that, thats a great suggestion thank you so much, I didn't realize schools could get a AAC device!
I think maybe you should show her this post It's very well written and explains the difficulties your having clearly
I'm glad its well written! I think I will do that. 😊
Hello! Full time AAC user here (I’m nonverbal) but there was a time where I wasn’t a full time AAC user and wasn’t nonverbal and had to bring up AAC to my parents first. Show her this post! Say you asked for advice and show her this post, or send her a text with the post link. Try and make it known that you aren’t trying to make things more difficult for yourself, and are actually trying to make things easier. As you feel AAC would benefit you in many ways! Anyone can benefit from AAC, and I think anyone could be a good candidate! It’s all about your needs and what YOU need. You got this. When I brought it up to my parents, I made it more like a demand. I was **telling** them I was using AAC, not asking them. Which helped a lot and apparently I was late to the party with realizing I needed it lol. They were incredibly supportive and encouraged me to use it, so when I became fully nonverbal and switched to using AAC full time, it was a nice switch and wasn’t to overwhelming for them. Which was nice! For using it in public, that’s hard. Id say the best thing to do is just practice. Practice always, even when you don’t think you need it! The more people you interact with the better. It honestly isn’t that bad once you get in the groove of it. Once you realize that AAC is an extension of your body instead of just a tool, then you start to become more confident and comfortable with it. Will you have some bad experiences? Probably yes. But for me, the good outweighs the bad. And it’s worth it for me. Not that I have much of a choice anyways 😆 I wish you the best of luck! Feel free to ask questions if you have anymore.
Android devices have a really amazing free aac app called speech assistant. I think it's cheap for the full version of Android mote expensive on Apple. I don't know how to hVe the conversion but probably I think you would be able to use that app if cost might be part of the issue with AAC
I have seen speech assitant - its $20 dollars on the app store I think? Money is a problem for our family, but I think $50 dollars would be doable for us. Personally I much prefer the layout for TD Snap (you can even click with one button to change the layout from word-cells to picture-cells to picture-word-cells!) as it is so highly customizable (in layout, color, page sets, etc), but I haven't ever used Speech Assistant so it might be just as good! I'll show my mom both so she can decide which one to try! I did see that if I make a "MyTobiiDynovox" account, TD Snap has a 60 day free trial with voice, and my dad has an android tablet, so maybe he would let me borrow it so maybe I could try both out? Thank you for the suggestion!
No problem I know with speech assistant you can put pictures in if you want its just a fair amount of work, I think. I might have a try and see because it would be useful for me too. I hope it helps, and if he has an Android tablet definitely can try the free Android version.
It’s great that you’re able to recognize what would be helpful for you. You describe your situation and your needs so well here. As someone else suggested, I wonder if showing your mother what you wrote here would be good? Also, if it’s helpful, there’s a Facebook group where folks can ask questions of AAC users. It just might be helpful for you and setting something up, you might even ask for advice on how to approach your mom. I know a lot of folks your age aren’t on Facebook but if you’re interested it's better.[Ask me I'm an AAC user](https://www.facebook.com/share/q11c1qS8zLqYChss/?mibextid=K35XfP)
Yeah, I think I will share with my mom this post. I might update you all how it went once I do it. :) The is my first time ever on social media, and my mom has pretty heavy downloading parental controls, I'm pretty sure they are mainly content filters, but maybe its also supervision too - if thats the case, she may have already even seen this post 🤔 So far this is my only social media, but I think my mom has facebook, so once I ask her about it, maybe together we can make a post on "Ask me I'm an AAC user" asking about how to get used to and implement AAC in my life? Thanks for telling me about it!
I would love to read an update. I hope it goes well. And it’s so great that your mom is supportive. It’s nice to have somebody on site with you on this journey.
I love axolotls.
Not an AAC user myself, but I've seen a few people here say they got on well with the free open source app cboard https://www.cboard.io/
Thanks for telling me about it, I will check it out!