PECS Book Exchange

Yes I like to come up with crazy titles to capture your attention.

Since completing our PECS binder I've been showing Ainsley cards when I have time and think of it. Keep in mind that there is a lot going on at our house. The usual things plus right now my seven year old is obsessed with Harry Potter. She can't go 5 minutes without asking a Harry Potter question, showing me a picture she's drawn from Harry Potter, or is insisting on wearing a pleated skirt knee socks and a turtleneck in July or some other non-sense such as decorating the entire house to be Hogwarts (that was today). My son just had his 5th birthday this week complete with Pirate party on Saturday, my crazy neighbor went postal about trimming the tree by the sidewalk, I had issues to resolve with one of Ainsley's therapists last week, Ainsley has been vomiting again for several weeks so I've been considering the pros and cons of surgery plus doing lots of stinky laundry and I'm working with the state and an agency to get Ainsley a nurse. So I've been busy as usual but I try my best to keep up with the therapies.

She gets really excited every time I bring out the PECS binder which I hope is a really good sign. Today she was having a blast looking at the cards and turning the pages for a few minutes together. According to PECS protocol the first step is to teach the child that handing over the picture means they'll get whatever is in the picture. Today I handed Ainsley the PECS card with the picture of books as I'm holding a book in my hand. Immediately she handed over the card with a big smile on her face. I handed her the book in exchange. This is the exchange part of the Picture Exchange Communication System (PECS). She kicked her little legs with excitement and had the biggest grin on her face. What a cutie. I hope this means she's really understanding how it works and that she'll keep handing over those cards. Mostly she likes to hold onto the cards. Previously I wrote how she'd identified people in the PECS pictures. Well after doing that a few times she has since gotten pretty pissed off when I ask her to repeat that performance like a dog and pony show. And if I offer 2 PECS cards and ask her to pick one she's gotten pretty smart and will put out both arms and take them both at the same time so she gets to keep both instead of just the one she would otherwise have picked. At least with the exchange activity she gets something in return. Once she's mastered this step we can move on to the next. It would be so great if she could let us know what she wants.

Picked a PEC of Pickled Peppers

Just kidding but that may as well be what I'm saying as far as some of you are concerned I'm sure you've never heard of PECS (Picture Exchange Communication System). It's a communication system for people that can't speak. Our speech therapist started using them awhile back. They are pictures cards that a non-verbal person uses to communicate and request items in their environment such as toys and activities. Back in May I took a bunch of pictures of things that Ainsley is familiar with and printed them onto cards. They laminated them for us at Boyer and we got them back today. I tried them out and Ainsley was able to identify the correct one 3 times when presented with 2 pictures! I was amazed to find that she can identify items in pictures. I'm very excited to start working on this with her and I suspect she will learn quite a lot if we start pairing everyday activities with the pictures. The next step is to put it into a binder with velcro attached to the cards and pages so she can look through the book and make choices. It's great for her since her motor skills make it difficult for her to do sign language and the advantage is that anyone (who can see, grandparents get out the bi-focals, ha ha) can use them to communicate with her, not just people know know ASL. It's a long process so look for updates on how this is going over the coming months.

Ainsley Using PMV

In my post from 6/1 I was referring to Ainsley "talking". Here's a video that is a pretty good representation of how she does wearing her PMV. If you listen long enough you can hear some fluctuation in her "voice". A PMV (Passey-Muir Valve) is a plastic device that fits over the trach. It has a valve that opens during the inhale allowing air into the trach to breath. When the inhalation stops the valve closes and the air must be exhaled through the mouth and nose. Adults on the trach forum have said that wearing a PMV can at times feel like your head is going to pop off. It is an adjustment for a child to breath differently than they ordinarily do. It is the flow of air through the vocal cords that makes sound and gives us our voice. For Ainsley since she has an obstruction (swelling) in her vocal cord area it makes vocalizing difficult. Wearing the PMV is not always comfortable for her. Many parents on the trach forum report that their child doesn't love wearing the PMV and it takes time for a child to learn to use one. We are hopeful that Ainsley will find it easier over time to use the PMV. Until she does or until she gets the trach out we are working on alternative communication methods such as sign language. Due to her motor skill difficulties sign language is not likely to be easy. So we are in the process of developing and using a PECS book (I'll explain in a later post.)