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!

Activity: Story Boxes

I'm using this new series of posts to share about some of the activities that we do with our kids! We spend a ton of time researching online for new and creative ideas, and coming up with a few ideas of our own. I hope that this series will be a help to other people in coming up with creative ways to teach their kids!

Activity: Story Boxes

Skills: Increasing vocabulary, attaching meaning to words, promoting excitement about reading

A story box is a way for a child to understand what the words in a book mean. This activity was originally meant for our blind children. We choose a story (such as Goodnight Moon) and then fill a box with all the items in that story (telephone, red balloon, 3 little bear, comb, bowl, socks, etc). You sit with your child and read the book, and as you get to that word, you let them feel the real-life object. It's a way to engage them in the story, as blind children can't see the illustrations, and to teach them the meanings of the words in the book. We found it is actually good for all of our children. Our kids have limited life experiences and none are fluent in English (or any language, for that matter) so it's great for their vocabulary... and it's fun! We have tried this with many of our kids and they all love it! Dinah has trouble focusing her eyes on the book pages, due to her nystagmus, so she liked having larger real-life objects to touch as I read.

We started with Goodnight Moon. I collected the following items: a bowl, a red balloon, 3 little bears, a telephone, socks, a comb, and a star (in the video, I forgot to do the star). In the beginning I used a big ziplock bag, but that was tight so eventually we got bigger storage bins. We are stacking them up and plan on creating a Story Box Library.

I have read this book with Charlotte many times now, and she loves the part when the mouse comes and I have now started running my fingers over her arms and legs and saying "squeak squeak!".  She always giggles. Now, when I say "the old lady whispering hush", Charlotte also says "hush!" Now instead of using a balloon that is already blown up, I use a deflated one and she likes feeling it as I blow it up and then let the air loose.

That same day I tried the activity for the first time with Selah, Nolan, and Louise. All three of them loved it. Nolan cried when it was finished and time to pack it all away! I later ordered larger boxes, as the Ziplock bag was too small to hold everything. On the box, I labelled the story in print and in Braille. I also went out and got the supplies needed for Three Little Pigs, so now our little library is growing with 2 story boxes!

I would like to continue getting more so the kids have a selection. If you are interested in helping with this, let me know! I have selected our next book, and put the objects we need on our Amazon Wishlist. It will be "If You Give a Mouse a Cookie" and all the items total to be 1000 rupees which will be under $20. If anyone wants to buy these for us, please let me know! Our story boxes are currently being kept in our sensory room where we also keep all the materials we use for therapy with our blind kids; our Braille and textured books, puzzles, musical instruments, etc.

Resources:
Story Boxes: A Hands-On Literacy Experience
Storybox Ideas

Activity: ASL Photo Scavenger Hunt

I'm using this new series of posts to share about some of the activities that we do with our kids! We spend a ton of time researching online for new and creative ideas, and coming up with a few ideas of our own. I hope that this series will be a help to other people in coming up with creative ways to teach their kids!

Activity: ASL Photo Scavenger Hunt

Skills: Increasing sign vocabulary , following multiple step directions, fine motor skills (cutting, gluing)

Tori and I are tag-teaming Nolan's school right now, with me doing a session in the morning and her doing a session in the afternoon. We realized that he is desperate to learn more sign to be able to communicate, and that he will never be able to read until he has a form of functional communication. We are choosing 5-6 signs per week and just doing activities with him (all play based) that incorporate using these signs. On this particular week, the signs were: Nikki mummy, Tori mummy, dog, iPad, loud, and quiet. We also wanted to review other signs that we previously taught him to see if he remembered them: shoes, bike, book, baby, ball. The following week, when we did Part 2 of the activity (making the book, below) we were focusing on the name signs for the other kids.

Nolan and I sat with the iPad and I signed to him "I am taking a photo of Nolan with the iPad". He knew all these signs (photo, Nolan, iPad) and posed for a photo.

Next I told him that I want to take a photo of a ball with the iPad, and asked him to bring me a ball. He understood all of this and was very excited to race into the other room to search for the ball. He successfully brought me back a ball, and I helped him hold the iPad steady to take a photo with it.

We continued along in this way. I would sign an object or person to him, and he would have to go around the house and bring me back that object or person, and then we would take a photo of it. At the end, we reviewed all our photos and their corresponding signs.

Nolan loved this activity. He was proud when he understood exactly what I was asking him. When I signed to him that the game was finished, he started crying!

He successfully retrieved nearly all of the items/people that I asked him to search for in our scavenger hunt. He didn't remember "bike". He looked at me quizzically, and then pointed to his feet, asking whether I meant "shoes", as the signs are similar. I pointed to the direction of the bike and then he remembered. We introduced 1 new word, "puzzle", and the others were all review.

Nolan is a helper and he loves when we give him jobs, so this activity was right up his alley as he felt important when I asked him to do something and he understood and was able to follow the instruction. He typically doesn't do well with 'testing', so this was a good way to be able to test his knowledge without him knowing that that was what I was doing. We will continue doing this activity and adding new objects as we increase his sign vocabulary.

For fun, the following week I printed out all the photos that he took so we could make a craft with them! He had to cut out all his photos and then glue them to paper and we made an ASL Photo Scavenger Book with all his photos. I wrote the word under the photo, and as we flipped through the book, he did the sign for the object. He did so well and it was a great way to review the signs he knows. I learned that he knows the objects very well (the toys he plays with) but was mixing up some of our name signs. He was happy to show it off the book to Tori when she got home!

Braille Part 2

Well, it happened. I am obsessed with Braille right now. The more I learn about it, the more fascinated I become. And the more excited I am about teaching Charlotte and opening these doors of literacy for her.

The Hadley course we are taking, Braille and Your Blind Baby or Toddler, is amazing. We are learning all about the importance of literacy right now, and how to promote early literacy in your blind children. We are also studying Braille ourselves as children whose parents understand Braille are more likely to be more successful with it.

I'm learning that at this stage, Charlotte doesn't need to understand the Braille letters yet, but I DO want to instill a love of reading in her! And since she can't see the pictures, giving her something to feel, like Braille text, texture, or objects representing characters in the story, will help engage her in reading. It's also important to be animated with my voice to keep her interested, and to involve her in the reading by asking her to turn the page! So right now, the focus is on her language development, her interest in reading, and her learning how to use her hands to explore things, on top of just exposing her to Braille so that when she gets older, she will already have that foundation.

In my last Braille post I listed some of the books that I had purchased in Braille. Lately, we have been taking other books and toys and adapting them to meet Charlotte's needs and make them more interesting to her. I ordered The Black Book of Colours, which is in Braille and all the illustrations are used with raised lines so blind readers can see the pictures with their fingers! I am excited for this to arrive. We have a few numbers books, and I went through with my Braille labeler and added the Braille numbers to each page so Charlotte can touch them as we count. I also took our shapes puzzle and added the Braille word (square, circle, etc) to the shape so we can read it and learn the names of shapes as we do the puzzle!

 

What is most challenging right now, for Charlotte and especially Brianna, is that both are resistant to touching things with their hands. We are trying to incorporate touch into their lives by doing activities which involve touching objects of different textures, and just being sure that whatever we do with them, we use their hands very purposefully to feel everything around them (not just during school time, but throughout the day). Right now Brianna screams and cries if we have her touch anything. Many of the activities we do with Charlotte, we do with Brianna as well, but only for very short periods of time as right now, our only focus for her is helping her overcome her sensory challenges. When she is more comfortable with touching things with her hands, then we will be able to really spend more time with these activities. Charlotte isn't as resistant, but she prefers to pick up an object and toss it across the floor. She very rarely will sit and just feel anything (musical toys, Braille books, sensory toys, etc) unless I sit with her and hand-over-hand encourage her to do it. Right now I am putting Charlotte in the Bumbo chair for a little bit of time every day, when I am occupied with the other kids, and putting toys or books on the tray to give her the opportunity to have those objects close by so she can explore them. Usually she just throws them off the tray, but I hope she will start exploring more often!

Resources:
Eight tips to introduce reading to your young child who is blind
Braille for my baby
Braille Literacy (CNIB)
CELL Practice Guides with Adaptations
Eleanor's In-sight: Early Literacy for the visually impaired

Activity: Proloquo2go Sandwich Making

I'm using this new series of posts to share about some of the activities that we do with our kids! We spend a ton of time researching online for new and creative ideas, and coming up with a few ideas of our own. I hope that this series will be a help to other people in coming up with creative ways to teach their kids!

Activity: Proloquo2go Sandwich Making!

Skills: Increasing English vocabulary, familiarity with Proloquo2go, following directions, reading, cooking skills

One day, Lily and I went to the kitchen and I asked her if she would help me make a sandwich. She was very excited and as we made the sandwich together, I described each step in English and took photos of her doing them.

The next day I took those photos and plugged them into Proloquo2go, putting them in the proper order and labelling each step. Even if you don't have Proloquo2go, you could print them off and use paper copies.

That morning I asked Lily if she wanted to make a sandwich again, and told her that this time, she was going to make it all by herself! I opened Proloquo2go and showed her how to follow each step. We sat together and she went through all the directions step by step, touching the button on P2G so it would read the direction outloud, and then following it with minimal help. The first time we did this, I was surprised that she didn't know what the words "knife" or "bread" were. Today she knew all those words and understood what was meant as she followed the instructions.

When we were finished following the directions and the sandwich was made, I took out some scraps of paper that had all the 9 steps written on them. We went through step by step and I gave her 3 paper options. I would say the step "ex. get the peanut butter" and she would have to look at the 3 options and select the correct one. Sometimes she would try to go fast and would just point to one without really thinking, but whenever I made her sound the words out and fold her hands together while she looked and thought about it, she would get it correct.

She was so proud of herself to do be able to complete this all on her own! She was especially excited when I helped her cut the sandwich into 4 parts. She, Tori, and 2 of our ayahs Parvathi and Prameela all ate a piece, and she beamed with pride when they told her how good it was!