Perkins Panda & Other New Supplies

Recently the Perkins Panda arrived at our door here in India, and I was so excited it did! It cost me a LOT of money (I was not expecting all those customs charges) but I am trying to forget that as I focus on how awesome it is!

Perkins Panda is a kit created by the organization Perkins, geared towards blind children aged 0-8 to assist in their literacy skills. It consists of a big stuffed panda, which is perfect for my blind kids as it is so intricately made. Each of its body parts has a different texture to make it interesting for the children as they explore and play with it. According to the website, "the kit includes three packets with interrelated storybooks produced in uncontracted (beginning-stage) braille, large print and high-contrast illustrations; activity guides and cassettes; a story box; a stuffed panda from Gund® with a backpack to hold a tape player and a guide to additional resources."

This video does a really good job of explaining all the parts that are included in the kit.

I have really enjoyed exploring this kit with my kids. I have used the book in Package 1 while sitting 1:1 with them and we have also used it in preschool, as it goes perfectly with the animal theme we recently worked through. There is so much to the kit that I still have a lot to explore, which is great as it will last us a long time! I also enjoy reading through the activity guide for new ideas on things to do with the kids. The books that come in the kit are so beautiful though. The textures are great and the concepts are age-appropriate and things that we are working on with our kids (like body parts). This kit is awesome! We used this as our story book in preschool 2 days in a row. The first day we passed Panda around as we read and found the body parts on Panda as we got to that part in the book. The second day we passed the book around and felt the textures and then had the kids find the body parts on themselves.

The only downsides are a) the songs/audio is on tape, and not CD, which is strange. Who has a tape player these days?! Not us, so we can't access it. b) the cost. Most of our Braille equipment is able to be shipped free through Free Matter For The Blind, but this wasn't and it cost me a LOT of money.

I'm working on body parts with most of the kids right now, so the Panda has been great in helping with that, especially as each body part has a different texture. Even our sighted kids love it! Louise decided to brush Panda's teeth after we she was finished brushing her own!

We also recently received a package from Seedlings with some awesome stuff inside. We got some books in Braille which have been great. We also received Print & Braille Alphabet Flash Cards and the Chunky Shapes Puzzle with Braille. The puzzle is great. I have done it recently with several of the kids and I really like it. We are doing a unit on shapes in preschool soon and that will be a great tool. The flash cards are amazing though.

Charlotte learned how to say "apple" on our "A" day with the flash cards! We spent time with the card, smelling it (it was a scratch and sniff- and she understood that and would inhale through her nose when I put it close to her), touching the Braille, and then holding the apple. We practiced saying "apple" and then I used her hand and let her help me cut the apple so she would understand that that is how we eat it. Charlotte has some struggles when it comes to foods, and I was sure she would scream and refuse to taste it. I didn't have her headphones, which I usually need to put on her to calm her enough to eat something new. She surprised me though... the girl loves apples!! I peeled the skin off and cut them into small pieces and we fed them to her and she kept on eating! I said "apple" every time I fed her a bit, so I am hoping she will start to connect the word to the fruit!

Just today we received an amazing package in the mail. Inside, someone sent us so many beautiful Braille books for Charlotte for her birthday. We were so touched when we opened it, and so surprised! I received it in the afternoon and already have started using the books with the kids. We plan on using one (Elmo Says) in preschool tomorrow with the kids. I am so excited to have some new books to read with Charlotte! We have no idea who sent this amazing gift. If you are reading and you are the person who sent us this, THANK YOU!!

LV Prasad Eye Institute

After our experience at Devnar School for the Blind, where we were told that there are no services for blind children under the age of 5 in the city, Tori and I decided we wanted to keep looking and get a clear picture of what is offered for early intervention for young blind children. We booked an appointment at LV Prasad Eye Institute with Dinah and Charlotte. Dinah has nystagmus and we wanted a 2nd opinion about whether there is anything we can do to help her vision. Charlotte has anophthalmia and we had questions about getting her prosthetic eyes. We also wanted to look into their rehab facilities to see what types of services are offered.

We walked in and my first reaction was surprise that there was nothing in Braille. Even our local Gymboree has Braille on the elevator, but this hospital, which is known for its excellent work for the blind, didn't offer that, which surprised me.

We waited awhile and then went to meet with the ophthalmologist. The staff were excellent and far better with our kids than anywhere else I have seen. The doctors danced with Dinah, pulled stuffed animals and chocolates out of their pockets, and rocked Charlotte for me when she got fussy. They asked us lots of questions and were kind and thorough. The wait times were very, very long, but finally our appointment was done. They said that surgery or glasses will not help Dinah, and they referred us to see their rehab team. For Charlotte they recommended rehab as well and also referred us to their team that fits prosthetic eyes. We booked an appointment to return 2 days later.

On Saturday we returned for our follow up appointment. We started in the reheb department and I can't even tell you how impressed I was. They have great equipment and very passionate staff. They have a vision therapist, speech therapist, physiotherapist, and special educator. The speech therapist was away that day, but we spent time with each of the other staff as they assessed our kids. The PT gave us lots of great ideas to work on the kids' strength. He also showed us some stretches for Dinah and said that she has a crouch gait. If it doesn't improve with stretching and strengthening, he recommended a tendon release. The vision therapist thought Charlotte may have some light perception. The special educator was incredible. She is Christian and told us the story of how she felt Jesus calling her to this work. She just glowed when she talked about the work that she does and as we bounced ideas around, we could see that she has an incredible understanding of special education. She also said that they serve between 10-15 children/day and are booked pretty solid. That is great to know for our preschool- the need is there.

Following rehab, we spent a whopping 2.5 hours waiting and being led to the wrong places. That is the only downside to LV Prasad in my eyes; it has to have the worst organization I have ever seen. No one seemed to know how to get us from point a to point b and by the end, Dinah was exhausted and sobbing from all the walking. But, finally, we made it to the ocularist to talk about fitting Charlotte for prosthetic eyes. We spoke briefly and he explained the process to us. He wanted to see Brianna as well, so we booked another appointment to come back on Wednesday to discuss the process in greater detail, along with the woman in charge of the department who was away that day.

We returned on Wednesday, and, as we have become used to at this hospital, we were sent to multiple rooms on multiple floors and then waited for nearly 2.5 hours before we finally went back ourselves and found someone to help us. After that we saw the doctor right away and she looked at both girls (Charlotte and Brianna) and explained the process to get prosthetics. She said that first, they would place a button conformer. This is done in a quick 5 minute procedure. We would have to return to the hospital frequently (every month or two). At some point (I'm unclear on when), they put in spacers which are designed to expand the sockets so that they will be big enough for prosthetic eyes. Right now, the kids' eye sockets are really tiny. Brianna's are so tiny that we can barely see inside if we pull her lids back. The doctor said that it wouldn't be until the girls are closer to 4 years old that the spacers would have done their work and the sockets would be big enough. At that point, they would get the prosthetics.

Tori and I spent a lot of time researching this. The whole process is still a little bit confusing to me and I may not have explained it correctly, but our biggest concern was whether there were reasons to get a prosthetic aside from just cosmetics. God made our girls the way they are and I don't feel right putting prosthetics in just to make them look "normal". I worry it would send them the wrong message, that they need to change who they are or that there is something wrong with how they look. I think they are beautiful and I love their faces with no eyeballs.

That said, many people told us that if we don't get the prosthetics now, their facial bones would grow incorrectly or unsymmetrically. In our research and asking on message boards, we found that this is true for people with microphthalmia or with unilateral anophthalmia (1 side has an eye, the other side doesn't) but this doesn't seem to be very common for children with bilateral anophthalmia, which Charlotte, Brianna, and Chloe all have. That said, Cedar has unilateral anophthalmia and is already 6 years old and we haven't seen any issues with his facial symmetry. We found many other parents who never got prosthetics for their children saying the same thing; they never had a problem with facial bone growth.

It is a big decision and we haven't taken it lightly. I thought a lot about what the girls would want when they are older, and also what their parents would want, if they get adopted one day. Tori and I both spent time praying about how to move forward, following the meeting with the doctor and a lot of research. We also spoke with Sarah as she went through this process already with 2 of the older SCH girls a few years back when they got prosthetics. At this time, we are not going to move forward with getting our girls prosthetic eyes. I feel at peace about this and think we are making the right decision for our girls. I keep coming back to the thought that God made them the way they are and they are perfect and beautiful the way they are. Cosmetics (beauty) is not a good enough reason alone to get the prosthetics for the girls, in my opinion, as they are beautiful and perfectly made as they are.

It was a great opportunity to get to spend time in the leading facility for eye care in our state and to get a better idea of what rehabilitation services are available. Overall, minus the pretty awful direction and organization of patients (even by Indian standards), I was really impressed with what I saw and encouraged by the great patient care once we were able to get in to see the doctors and specialists.

Lily's Journey With Proloqo2go

Back in June 2014 I purchased Proloquo2go in faith, praying that it would open the doors of communication for some of my kids. I purchased it with Lily, Nolan and Molly in mind. As we tested Molly on it, we came across a lot of problems with her not being able to clearly make selections, and Tori ended up coming up with a different communication board for her that works better. As for Nolan, we ended up deciding to focus on his sign language, as he responds well to that and is eager to learn more. But for Lily, Proloquo2go is perfect.

In July, I wrote THIS POST about introducing the program to Lily, focusing just on allowing her to choose activities using it. We went strong like this for awhile, but as time went on, I didn't really know where to take it next and other priorities got in the way. In the past little while though, I have been trying hard to program it to meet her needs, as she has so much to communicate lately and is trying very hard to tell us so many things.

In February, to re-familiarize her with the program, we used it to make a How To list to record the steps of making a peanut butter sandwich. Lily and I made the sandwich together and I took a picture of her doing each step, and then programmed it in. The following day, she used P2G and followed the steps all by herself to make a sandwich with minimal help! She was so excited to cut the sandwich up and share it with Tori and our ayahs. I am learning the program as I go, and now one tool I have figured out is that you can make the text smaller to fit all the words in. So if I were to do this again, I would go back and make the text smaller for steps like "spread the peanut butter" so it doesn't get cut off. I am hoping that this will also be a great way for her to learn sight words, so having the full word or sentence showing is important for that!

Next we did the Charlotte's Web activity where I programmed her lines into the P2G and we performed a puppet show in front of the other kids and ayahs. She was able to speak all of her lines using the program and she did so great! It was the first time she has ever gotten in front of a group to present something, and she was so proud of herself!

After that, I decided it was time to start using it functionally. After some trial and error, this is what Lily's home page looks like:

 

As you can see from that screen shot, Lily had just used the program to tell me that she wanted a sandwich. This was the very first time that she approached me, asked for the iPad, and functionally told me what she wanted. This was the first time she was ever able to tell us what she wanted to eat, aside from 'cake' and 'ice cream' which she can say verbally clearly. This was a huge step for her and she was giggling and giggling when I agreed and went to make her a sandwich. She has asked for sandwiches several times since.

 

Following this, I went into more detail in the feelings section. I made 'sick' to be a folder rather than a button, and added buttons within the folder so she could tell us what was hurting/why she felt sick. We role played for a bit, moaning and groaning over certain body parts hurting, and then she would use P2G to tell me in a proper sentence why she wasn't feeling well. An important thing to note is that my kids use 'sick' to mean both the traditional sick as well as in pain. So, if their leg hurts, they sign they are sick. Just 2 days after we role played, Lily looked sad and I asked her what was wrong. She did the sign for 'sick'. I brought the iPad over and asked her to show me. She typed 'I feel sick. My tooth hurts." The below is a different screenshot from when we were role playing, but this shows you how we have it set up. Lily then mimed swallowing something. I asked her if she wanted some medicine and she said yes.

  

And that is where we are at. Now, I am stuck and not really sure where to go next.

 

Some of the questions I am wondering...

1) Can I record my own voice to use rather than the computer voice? The program isn't pronouncing any of the kids' Indian names correctly, so I would love to record my own voice saying them so that Lily doesn't get confused. (thanks! I got an answer- I can't record my own voice but can change the pronunciation)

2) Is there an easy way to duplicate the way I have set it up to another iPad? I would love to have Tori's iPad programmed in the exact same way so Lily can use either iPad to communicate.

3) Where to go next....? This is the big one for me. What to do next and how do I get her using it functionally and constantly? Our biggest problem in understanding Lily is when we ask open-ended questions. She will tell us she is sad, but when we ask why, she just repeats that she is sad. Or she will call me and tell me to come and point to Louise and wag her finger, but when I asked what Louise did, she can't tell me.

 

If you have any experience with Proloquo2go or advice about how to expand what I have done, please contact me! I would love ideas!