1.17.2014

A voice of her own

There is not a day that goes by that I don't think about Sophie's lack of reliable communication. While I know we are doing the best we can given the circumstances, and we have wonderful support at the school, I still think if there isn't anything else I could offer her to help her express herself.

There is no doubt in my mind that Sophie understands much more than she is able to express. I also think her thoughts are probably quite complex but she is limited, horribly limited by her lack of ability to voice what goes through her mind. Her personality is such that after a couple half-hearted attempts she gives up and moves on, doesn't get frustrated. You can almost feel the shrug and a "nevermind". But- we do mind! We want to know what she is thinking so badly...

She is learning PECS but that system is limiting in itself. It is very good for requesting tangible objects and she does well with bringing us cards of food that she wants. It is good for her (and us) to be able to at least show us food preference, or make choices. However, when she turns to us while watching Thomas, eyes aglow and intently peers into our eyes voicing "upupupup" or "buh buh", PECS doesn't help because she doesn't want "apple" or "grapes" or even "cookie" (although she won't say no to that of course). No, she wants to share some excitement or joy with us and we miss her point. We give her lots of positive feedback of course but it's like fumbling in the dark, because we don't really know what she's trying to say.

Another problem with using the PECS binder which is not so much an autism issue, but a general preschooler issue is that whenever she is presented with it, she flips to the "junk food" page and starts requesting food. It's like you sat down your toddler and said "do you want to talk about trees, or grandma or park or do you want a cookie?". What would a sweet-toothed child reply, every time? Of course with a typical child you could not mention the cookie and they would turn their attention to the other topics. But a child like Sophie, if we removed the picture of the cookie, she would go for granola bar, or grapes, or blueberries- in other words she would never want to talk about anything else unless it was on her terms- she wants to talk when she gets an idea and when I go and bring out the book her idea is lost (not that I have a picture for it anyway, since I don't know what it is) and is replaced with a desire to ask for cookies.

On Facebook I got some suggestions to look into sign language. While I like the idea of it a lot (minimalist, no clunky binders, no iPads), I just don't see how she would do it. Sophie is very particular (understatement?). While she has very precise fingers and is "able" (in theory) to execute fine movements, the truth is- she doesn't. She uses her hands very rarely and for specific things only- she is very tactile and likes to sift through sensory bins, her brother's hair or peel the outer layer of her diaper. She never uses her hands to let's say feed herself with a spoon, hold a pencil, even a toy. She never did any sort of finger rhymes, and even if I grab her hands in mine and take her through the motions, she just lets her hands go limp and doesn't try to imitate the motions. But I will speak to her speech pathologist and see what he thinks about it. I might learn some baby signs and see if she would be receptive to the idea.

I am always thinking about technology as literacy is my ultimate goal, but truthfully am quite overwhelmed by all that's out there. We did meet with an AAC clinic and have another meeting in February. It's my impression that we have many more meetings than any tangible action and it's really up to me to implement any system that I want to try, just like I made all the PECS myself. Of course I realize there are no magic solutions, just a lot of hard work and a child like Sophie who is generally calm and easy going but very elusive, is hard to work with.

I don't have a good ending for this post because this is how I feel- doubtful, overwhelmed, not quite sure which way to proceed, where to go from here. I just know Sophie has a great potential but she needs to be able to communicate to realize it. And I want to make 2014 the year she gets just that- a voice of her own.

 

 

17 comments:

  1. I think that Sophie has actually made some lovely progress. As you have discovered, PEC's is fine for requesting stuff but doesn't cut it for experience sharing. You could start of with some really basic signing... for example, the signs for finished, drink, more... and see how she goes with that. What I found helpful with Nick is to go back and redo all those early stages that he missed out on. You know, umm, things like... learning to reference faces and read body language. Because the early development has been addressed and continues to be addressed, he is way more expressive these days (and he uses a combo of signs, sounds/words and uses his face and body to communicate) Just my thoughts! x

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    1. Di, I value your input very much! I love watching you work with Nick. I would love for sophie to get head nods or shakes- how powerful for her to have the ability to say yes and no. Now she just grabs what she wants or pushes away what she doesn't want. Her eye contact and response to her name is pretty good, with me the most. Yes I think I will look into some basic signs. Thank you.

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  2. That's a sweet face in that picture.
    Oh, I hope the signing will help.
    I think you're such a good momma, and I can hear the want in your words for Sophie to bloom.
    I believe she will. 2014 - I hope with you.

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  3. You are such a great mom and Sophie is going to find her voice. thanks for sharing your story with us so honestly. I have been trying signing with Owen but he has no interest except the "all done" sign which he uses for everything

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    1. Hey- it's a start! I'd take it. I think Sophie would be more of a "more" type of gal- especially when it comes to snacks, lol. Thanks for your comment!

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    2. I know Nate's school is giving him a "trial" of a program at school- can't remember which one bc they don't want to send it home until they know it's working for him- but what struck me is how incredibly expensive these programs are!!! It's such a hard balance because I want him to communicate so badly, and yet I'm just not sure he's ready- that's why the fact that school decided to give it a go was such a blessing. If it works for him they will send it home, and we won't need to pay for it. Does Sophie's school have "alternative technology" evaluation available? It would be a great way to "sample". I hear you on sign language- Nate picked up "more", and "thank you" after about 6 mos, but in general PECS have been more helpful in easing his frustration. That being said, I would so love to know what he's trying to communicate about other things!!!

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    3. Yes that's one of the meetings we had- here the aac technology has its own agency and they interviewed with us at home and then we had a meeting at school. Of course pecs falls under aac technology as well and so they are focusing on that. I have another meeting with them again in Feb. I know the real communication apps are expensive but there are some I mean to try- just some basic voice output apps to get her to see she can press a word and it will say it for her. But still- long way to go yet from requesting snacks- I so want to move beyond requesting snacks, lol.

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  4. Since she knows PECS, you could try adding symbols for other types of messages and then model them for her...."look, that's Thomas" or "he's silly" or "Thomas is my favorite". She'll learn the meaning of the symbols by watching you use them appropriately.

    If you have an iPad, there are lots of apps out there. Each with different features. How many PECS can she scan through to find what she's looking for? That's a good indicator of how many cells she might be able to handle if she were using an AAC app. If she trials an app, one key to success will be adults in all her environments modeling how to use it, just like we do when we talk to babies and toddlers. Good luck with your AAC team, hope they give you helpful input!

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    1. Wow- such great tips! She can scan through a whole page of small pecs to find her gummy bears, or the like. She did really well with trials with snacks during her ABA group. It's talking about things other than food that we are having issues with. I like the idea of modelling the phrases like you said- I guess that never occurred to me! Thanks and thanks for reading.

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  5. Glad my thoughts were helpful! If she's only requesting food right now, you could also add other items (TV shows, books, sensory items, toys) for her to request. It can be hard to get into the habit of modeling, but if you think of her AAC the way you think of teaching a toddler to talk, it usually helps ;) You mentioned wanting to try basic voice-output to see how she responds. SoundingBoard is an inexpensive (might still be free, even) app you could play with. You can do 1 cell up to 9 cells per page. You can also make a home page and link each page to a cell/button, if you want to set it up that way. Good luck!

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    1. I am going to check it out right now :)

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  6. I don't know anything about PECS, so I don't know how this would work, but have you thought about just removing the entire junk food page from the binder? You could keep it in a folder on top of the the refrigerator or somewhere else that's "out of sight, out of mind", and only bring it out when you intend to give Sophie a choice of desserts or snacks.

    I'm not sure that it's a good idea to tempt ANY preschooler with a conveniently-available "junk food page" that practically cues them to demand non-nutritious treats multiple times a day. Just sayin'.

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  7. I just found your blog through "Chasing Rainbows" and this post hit home with me. As a Mom to a now 15-yr-old non-verbal boy with autism...I've been through ALL the frustrations you describe, and then some! We've run the gamut with it all, from schools, education, therapies, to helping our son communicate. He started out with the PECS system which was a good starting point...but like you say...very limited, inconvenient, & frustrating. Our son could not go the 'sign language' route because of a global apraxia, not just with speech but his "signs" would never be accurate enough for others to recognize (even though WE could). So our next step was an AAC device, we chose the Springboard Lite. He used it for a few years and was doing well, but it was cumbersome and required SO much motor planning just to navigate the pages. We finally purchased an iPad with the ProLoQuo to Go app. And he is FINALLY finding a voice!!! Just to tell you...I spent many years crying about him and worrying(and God knows I still do at times) but I thought all these years that he was so low functioning and would NEVER be able to communicate& would just keep getting more & more frustrated, but a miracle is happening! For years, I still held on to the hope that he would talk one day...and I prayed so hard for that. But it didn't happen. And after taking him for a consult & eval at Pittsburgh Children's Hospital speech dept., a wonderful, kind, speech professional finally told me what I knew in my heart all along; chances were he would NOT talk because of the severe apraxia and autism. But he told me to put all my energies into a communication device and find support people to help him learn it. At first, all he would communicate was mostly "I want milk" or food items. But I want to give you hope...our son has come so far now, that we just cannot believe it!!! It has FINALLY made me see that he is NOT the low-functioning child I so sadly mourned! He is SMART!!! And I am so much happier! Please know that it WILL get better and your child will do amazing things! I'm sorry this is so long but I wanted you to know there is light at the end of the tunnel. If you want to know more or have any questions, let me know & I'll give you my email. Lee Anne

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    1. Thank you for sharing your story! It's wonderful to hear stories of children who found their voice. Since I've written this post I did go ahead and purchase an app (speak for yourself) and am working with sophie on it everyday. She is mostly requesting thomas now but I know she understands so much. I also think she is so smart, I never doubt it, I see it! That's why I am so insistent on helping her communicate so she can develop language and share her ideas. Thanks again. I'm also on facebook (on the train with sophie) if you want to check in :)

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  8. So glad you found an app that is working for your Sophie! I didn't mean for my (long) comment to infer that I was sad and un-accepting of our son if he were not smart or because he was low functioning. I was just mourning for HIM and his struggles and we loved him and were so proud of the child he was meant to be.

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