Failure to Thrive

When Brianna moved into our home, she was 17 months old and 7kg (15lbs). During her first week or two with us, she wouldn’t eat and dropped down to 6kg (13lbs). We tried solids with her, mixed bananas, baby cereal, and she wouldn’t take any of it. We were giving her bottles of Pediasure. We found a donor to start covering formula and then she went back up to 7kg. We could never get her to get over 7kg though. When Tori left on her break to the US, she taught Brianna’s ayah, Prameela, how to mix her bottles and we decided that would be her job. After about a week and a half though, I noticed Brianna looked thin. I started monitoring what she was drinking and noticed that she wasn’t drinking nearly as much as she had been when Tori was here. Not because Prameela wasn’t mixing it, but she was refusing it and spitting it out. I weighed her and she was back down to 6kg. I decided to take over her feedings myself and began tracking her food in-take. Since then, this is what she may drink on a normal day:

8:30am- 9oz bottle of formula mixed with vanilla yogurt. Drank all

10:30am- 6oz bottle formula. Drank 3oz.

12:30pm- 3oz bottle formula. Drank all.

2pm- 9oz bottle formula + vanilla yogurt. Drank all.

4:45pm- 4.5oz bottle thickened formula, yogurt, and mixed sapota fruit with bottle nipple cut open a bit. Refused it.

5:30pm- 1 spoon of baby food after awhile of trying to get her to swallow it

7pm- 9oz formula. Drank some at 7 and then finished the rest an hour later.

I want to get her to the point where she will drink five 9oz bottles/day. Right now she is sleeping with her ayah, Prameela. I have started putting a 6oz bottle of water with them at night, and the can of formula, so if Brianna wakes up in the night (which she often does), Prameela can give her a bottle then, rather than just giving her water.

Brianna has what we think is sensory processing disorder. She is very sensitive to taste, touch, and sound. She is blind, so has no visual input. I haven’t noticed anything about her reaction to smells. This really makes things challenging for her as she becomes very upset and overwhelmed easily. It is especially difficult when it comes to eating.

Brianna won’t take anything by mouth. She will drink her bottle (Lactogen 3) and if we mix smooth yogurt or baby food (only certain kinds) with the formula she will drink it. If we give her that same thing by mouth with a spoon or even with hands, she won’t take it. She will skip meals rather than take anything by mouth or even by bottle if she doesn’t like the texture. Recently with Tori she began drinking bottles of mixed rice/curry/egg, like the other kids eat. I can’t get her to drink that though and she will refuse it and skip the meal if that is what we give her. This morning she did drink a bottle of mixed chapatti and potatoes. We sit with her daily and try to get her to eat baby food or yogurt by mouth. She screams and flails and might (accidentally) swallow one bite or 2 at the very maximum.

Yesterday I booked an appointment with a pediatrician to have her looked at. As I expected, it wasn’t all that helpful. No one here knows what sensory processing disorder is, and I really think that is at the root of all this. They classified Brianna as “failure to thrive”, meaning that she is under the 3rd percentile for her age group. She is actually off the charts and is the average weight of a 3 month old. She turns 2 in eight weeks. Her body isn’t getting the nutrients it needs to grow or hit developmental milestones.

Brianna is a cute, sweet baby who has already come so far in the past 4.5 months since she joined our family. Tori has dedicated so much time to helping her progress with her aversion to touch, and now for the first time she is touching toys and starting to enjoy playtime. Our volunteer Candace has been really dedicated to caring for her and finding things that she likes and ways that we can help regulate her. She discovered that when there are loud noises, even just a group of people talking, Brianna shuts down. When Candace covered her ears and muffled the sound, she immediately stopped crying and was calmed. Brianna has the cutest smile with her mouth wide open and her little teeth protruding. She swings her head side to side like she is dancing. She loves our preschool Circle Time song, that we open class with, and that tells me that she loves preschool. She gets so excited every day when the song comes on, and I think it’s more than just the song. She is excited to learn and play, which is a long way from where she used to be. Before during Circle Time she would have to sit in her Bumbo chair because she couldn’t handle sitting in someone’s lap or on the floor and have all that sound and touching (movement- head and shoulders knees and toes, waving hi, etc). But just recently we don’t have to use the Bumbo anymore and she is able to do fine without needing the safety feeling that it gives her!

So, what do you do when your sweet, beautiful almost 2-year old screams when you try to give her food and refuses to eat to the point that she is the size of a 3 month old? We don’t know. We are researching and experimenting and trying to figure something out. If we were in Canada or the US we would have occupational therapists, speech therapists and feeding therapists who could help us through this. Here in India, we have Google! (we do have speech therapists here but no one that seems to know about these specific issues). We really have 2 challenges: 1) How to give her food in her bottle that will help her gain weight – how to increase her amount of feeds without her refusing it, what can we add to the formula, etc. 2) How to get her to eat food out of the bottle, by mouth/spoon?
The doctor recommended cutting the nipple of the bottle a bit wider and seeing if she will take Cerelac (baby cereal) in a bottle. She said to do this only while Brianna is sitting up and being monitored so she doesn’t choke. I am going to try that for dinner tonight. She suggested giving her formula by spoon (she won’t take it, despite the doctor arguing with me and saying she “certainly” would). People have suggested making her feeds in her bottle thicker. We have done that with beginning to mix rice and other food. She is picky about it but is drinking it sometimes.

We are open to suggestions from people who have had experience with this sort of thing! We don’t know where to start! My focus right now is just giving her a bottle as much as possible so she can put some weight on, but soon we want to shift our focus to teaching her how to eat by mouth.

Adding Verbs to P2G

Lily has been doing so well with her Proloquo2go and learning how to use it to communicate. The last time I updated (Lily’s Journey With Proloquo2go) we were focusing on feelings and using the phrase I want ______ where she could request a certain toy or snack.

Since then I have tweaked those folders a bit (added some toys, added ‘thirsty’ to her feelings, etc) but our main focuses have been adding a Verbs folder, a Little Words folder, and an About Me folder.

This is what her home page looks like now (first image). If you click “more”, it goes to what you see in the second image. That second page has a bit of work that needs to be done and it’s a little disorganized, but it’s a start.

The About Me has been fairly easy to teach Lily. I added it to give her some more things to talk about when just chatting about people. From her home page, Lily can easily click ‘more’, and then ‘about me’ and it will lead her to the page that you see below. I had a lot of fun learning what her favourite colour is and what she wants to be when she grows up, as we sat together and programmed it in. She was adamant that her favourite colour is black because that is the colour of her hair. I made a folder for jobs and slowly went through and confirmed that she knew what each job was, and then asked her to show me what she wants to be when she grows up. It is sweet that her ayahs are so caring and good with her that that is who she wants to be like. She has no concept of the words ‘best friend’, so that took some explaining. She also doesn’t know anything about geography and I still don’t know if she understand what ‘I live in Hyderabad, India’ means, although we pulled out a globe and I tried to explain it to her as best as I could.

To go along with this, I decided to start teaching her what cerebral palsy is. Maybe one day she can use her P2G to give people more information about her diagnosis, when they stare at her or ask questions. It would be so great if one day, when people approach me and ask about her, if I could just tell them to ask Lily and she could use her P2G to communicate and educate them. A lot of people here in India don’t know what cerebral palsy is. That is why you see the button ‘I have cerebral palsy’. She and I are watching some videos together where she can see characters with CP to help her understand why she has trouble doing things like walking, talking, and holding a pen. I don’t know how much she understands yet, but she is really excited by this button and points to her leg and then touches it often.

Teaching Lily verbs and little words (and, in, the, on, with, etc) will be more of a process. Lily lived in an orphanage for the first 7 years of her life. She was spoken to in Telugu and was exposed to English. When she came to us, she couldn’t speak at all and we realized quickly that she didn’t fully understand Telugu (or English). She had a lot of vocabulary and command words in Telugu (go, come, eat, etc) but no one had really spoken to her much. She wasn’t able to follow 2-step instructions or answer yes/no questions. Now that we have had her for almost 2 years, she is more fluent in English than she is in Telugu, but she is still not fully fluent. She has a ton of vocabulary and is able to speak many words as well, but she can’t put sentences together. She can answer yes/no questions now but still struggles with other “w” questions (who, what, where, when, why). All that to say, I want Lily to be able to use P2G to speak fluently and to create unique sentences. Because of that, we are working on teaching her to form a proper sentence.

The verbs that we are focusing on first are ‘put’ and ‘get’. She didn’t know either of these words. The little word that I am focusing on is ‘in’. When she opens her Verbs folder, this is what it looks like. Some of these verbs she knows well (come, drink, eat, go, look, play, pray, sleep) but the others (get, give, and put) she needs to be taught.

When she opens her Little Words folder, this is what she sees. She doesn’t know any of these words or how to use them properly, so this will take awhile to teach her.

In order to teach her these words, we are doing a lot of fun, play-based activities where she has to use her P2G to continue the game and tell me what she wants.

BABY ACTIVITY: Lily loves to play with her baby dolls so I used that to incorporate teaching her these words. First, I will model how to use the P2G as I type “go get baby” (baby is in her Activities folder). Once she gets the baby, I will once model how to play the game as I type “put baby in ____ (fill in with a certain room in the house)”. On her 2nd home page I created a Places folder and all the rooms in our house are listed.

I realized in this that Lily doesn’t know the names of most rooms in our home. She is catching on now though. I model it and then she brings the baby to the room I say. She types “sleep, baby” in her P2G. We then have the baby pretend to sleep but wake up crying. She loves this and thinks it is really funny. “Oh, no! The baby doesn’t want to sleep here! We have to choose a different room for the baby to sleep in. Lily, where should we put the baby?” I ask her. It is then her turn. She has to type “put baby in _____ (room choice)” and we continue the game like this.

COOKING ACTIVITY: Lily loves to pretend cook and when I ask her what activity she wants to play, she often chooses cooking. I created a folder where all the items in the cooking set are listed. In a Things folder, it opens up to various options (only 2 for now, but eventually I will add more). If she clicks Cooking, it will show buttons for all the pieces in her cooking set.

In this game, she has to tell me what foods to put in the frying pan so we can make dinner. This sentence sounds like “put ______ (food item, ex. carrot) in frying pan”. Once she is finished and all the foods are in the frying pan, she types “finished” and we mix it, and then she types “I feel hungry” and we pretend to eat. Again this works on the ‘put’ and the ‘in’ concept and I incorporate ‘get’ by putting different pieces further away from me in the room and asking her to get them.

This has all been great fun for her! I will focus on this for awhile before introducing any new concepts. I am going to brainstorm some more games that we can play using “put”, “get”, and “in” and then soon I want to start teaching “on vs. in”. It is a LOT of work for me programming this as I don’t have a clue what I am doing and am learning as I go, but it’s really fun and Lily is so excited about it!

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!

Braille

Aside from Charlotte and Brianna, all of our blind children have profound cognitive delays. Most of them are also on the autism spectrum. When Charlotte came to us, we knew that she had lived the first 19 months of her life in an orphanage where she was deprived of affection and stimulation, and we know very well what effect that can have on a child's brain. We had no idea whether Charlotte would talk, one day go to school, or be able to do things like read and do puzzles. We still do not know these answers, but the longer that Charlotte is with us the more we believe that as she gets older, she will be a typically developing blind child. Already she has surpassed Jasmine, Cedar, Chloe, and Promise in terms of her receptive language. This is new for us, and has led me to spend a lot of time researching educating blind children. Although Charlotte is only a year old (almost 2), I want to give her the tools she needs to help her mind grow, and to prepare her to navigate life as a blind child and adult. This article, Beginning Braille Skills, was really eye opening to me. The Hadley School For The Blind also offers a lot of online courses for professionals and family members of blind children/adults, including a free intro to Braille course. Their Braille and Your Baby or Toddler course is $99, but looks amazing. Tori and I signed up and start soon.

I learned that just as a sighted baby and toddler sees print everywhere, a blind baby and toddler needs to "see" (with their fingers) Braille. Sighted children understand what letters are long before they learn to read. They see letters in books, on cereal boxes, on signs. Charlotte is only a baby and nowhere near ready to learn to read, but we need to expose her to Braille in the same way that sighted babies are exposed to letters. Because she is blind though, this needs to be more intentional. With our other blind children, we have never used Braille because right now they are not at the stage where that seems like something appropriate to be working on. Maybe one day this will be something we do with them, but for now we are working on other goals, and so Braille is completely new to our house!

I purchased a Braille labeler online through the Braille Bookstore for $24.95. You do not need to know Braille to use it. You simply type a word letter by letter in, and it prints it in Braille onto labeling tape which can then be used to label anything in your home. The woman who recommended this product to me suggested buying extra clear labeling tape, so I did that as well.

I found, when I asked online on the 2 support groups I am a part of for parents of blind children, that there is a lot of different thoughts for how to label and how to expose your child to Braille. Some people said to label everything in the house. Others said just do those things that are labeled in print (like, for example, buttons on a microwave, dishwasher, etc), others said just to start with the first letter rather than doing the whole word. I ended up labeling some of her favourite things and some things that she touches frequently throughout the day. As she is near it or as we use the object, I run her fingers over the Braille and say the word. We labeled things like; water (her bottle), all the rooms in our house at the door frames, her toy box, and the beds and table.

I also ordered our first Braille books! I am a huge Robert Munsch fan, so I ordered Murmel Murmel Murmel off the Braille bookstore. Off Seedlings Braille Books For Children I ordered Love Bug, Clifford's Bedtime, Good Night I Love You, and That's Not My Duck. The book from the Braille Bookstore was just the papers with the text and Braille binded together. The Seedlings company takes the actual books (with pictures, as you get in a bookstore) and pasted the Braille to each page, so I liked those best as my other kids can read them and they are board books so the pages are thicker for Charlotte to turn. I was pleased to see all of our favourite books and authors available in Braille! There is contracted Braille which uses contractions/abbreviations, and uncontracted Braille, which is the standard Braille alphabet letter by letter. I purchased all uncontracted Braille books (grade 1) as that is usually how kids learn. In addition, an awesome mom named Ann, who has a daughter with anophthalmia (same as Charlotte, Brianna, Cedar, and Chloe) made us an ABC Braille book to introduce Charlotte to the alphabet and to read through as we sing the ABC song! The first day I introduced the Braille books to Charlotte, she was super grumpy and I was sure it wouldn't go well. I did a few other activities that she cried and fought me through. Then I pulled out the Clifford Braille book and ran her finger over the Braille as I read. All the sudden the crying stopped and she sat, still with her head turned slightly to the side in concentration, until we finished the full book. She was so interested in feeling the Braille!

Aside from just exposing her to Braille, I learned a lot about pre-Braille activities that I can do with Charlotte (and will also do with my other blind children). Pre-Braille skills are the skills that will allow young children to one day learn to read in Braille, so things like discriminating textures, building hand strength, and fine motor skills to explore with their hands. An example is when we read, I have her practice turning the page and move her hands so she learns that we read from left to right. We also do an activity where we hide different objects inside Playdough so she can practice exploring with her hands and discriminating different textures. Recently I put beads inside Playdough and helped her squish the Playdough and find the beads inside, while talking about the different textures to teach her words like "squishy".

Another activity we have tries is puffy paint colouring: This is where you take a colouring page from a colouring book and cover all the lines of the image with puffy paint, so that it sticks up from the page and a blind child can feel it. Then, they can colour the object with crayons being able to feel where to colour. Rather than just scribbling on a paper and not being able to see it, this is more interesting and teaches the child to use their hands to feel where to colour, and also to discriminate the 2 textures (smooth paper and raised paint). Tori tried it with Brianna and Chloe. Chloe tolerated it well for a bit. Brianna wasn't ready for this yet, but we are going to try to keep pushing her and try to expose her to new things using her hands. She screamed and fought it, as she does everything right now that involves using her hands to explore.  Brianna is so new and we are still getting to know her. We are trying to expose her to the same activities that we do with Charlotte, and as she gets more comfortable and we get to know her better, we will be able to better understand where she is at and what goals are appropriate. I was surprised that Charlotte loved the activity. . She sat calmly and seemed to be soothed by the back and forth colouring motion. Because of the paint, our crayon would hit the edge and we would know to start going in the other direction. I was pleased!

 

I found this awesome website, Ellie's Eyes, written by the parents of a little girl named Ellie who is blind. They shared the video "Ellie with her new touch and noisy book 15 months" and I loved it so much that I searched for that book and found it on Amazon India! It is called This Is My Monster. As you can see in the video, Ellie is able to listen to her Mom reading and knows when to press the button so she is involved in the story telling. She also feels the textures and turns the pages. Those are great pre-Braille skills and things that we are working on with Charlotte! Many years later the same family shared the video "Ellie using Pre Braille skills books". With this book, the child has to trace their finger from one object over several different paths to find something. For example, help the butterfly find his flower. I did some searching online and found that these are made through Tactile Graphics, a company out of South Africa. These are a bit advanced for Charlotte, but I bought one anyways and we will start exposing her to it. They are a bit pricy but are beautiful and handmade and the website has a lot of selection. I ordered the same book that Ellie is using in the video, Paths, but the website offers lots of other books that are great for developing pre Braille skills. It just arrived in the mail and I love it so much. It is beautiful! I am going to try it with Charlotte tomorrow.

So that is a little bit about our new journey in learning Braille! We are pretty excited to start learning more about it and introducing it to Charlotte and Brianna. We will keep you updated!

Food and Your Blind Child

Most of our blind children have challenges when it comes to eating, and as I did my research, I learned how common this is for blind children. This is so common as these kids have no visual cues to be able to see the food they are eating, are not able to watch others feed themselves and imitate the behaviour, and are often nervous to explore new textures, so eating new foods can be scary. For kids like mine, who spent time in institutions, their motor skills are delayed as well, which makes learning to feed themselves more difficult.

Here are some good blogs and articles on the topic: Food Glorious Food and Family Voices At Mealtime.

 

Charlotte really struggled during mealtime when she first came to our home and I remember we had to give her a banana after many meals because we weren't getting enough calories in her as she would cry and spit the food out, and a few times made herself gag to try to spit it up. We would also need to water everything down to a mush-like substance. We are working hard at exposing her to foods with different textures now, in the hopes that she will get used to them and become less adverse to eating crunchy foods, hard foods, etc.

I have shared in previous blog posts some of the foods she has tried since joining our home; quiche, ham, pancakes, Popsicles, chocolate, and various fruits, among other things. She is a big fan of Popsicles! At this point, the only foods she eats willingly outside of her usual rice/curries/tiffins, are bananas and Popsicles. Oh, and she loved chocolate raspberry cake at Starbucks. In 2015 I would love to see her expand the foods she will eat and also learn how to feed herself finger foods! She likes bananas, and because it is one of the only foods she is motivated by, that is the food we are using to teach her to feed herself. We put the banana in her hand and prompt her to bring it to her mouth. We have tried other foods like crackers, cookies, and watermelon, but she cried and refused. Now that Chloe is feeding herself, we are moving our efforts onto Charlotte and sitting with her every meal doing hand over hand feeding. So far... it is interesting! She hates it and likes to make that clear. One way we are working on helping her become more comfortable with trying new foods and feeding herself is by feeding her the new foods while she wears her headphones, listening to music. This has definitely helped and with the headphones on, she doesn't cry at all!

An unhappy Brianna the first time we tired to feed her semi-solids

Brianna is new to our home and we are still figuring out how we can best feed her. Even though she is 17 months old and has teeth, at her old orphanage we only ever saw her being given a bottle. On her first dinner with us, we took the rice and curry that all the other kids eat, added some water to make the consistency softer, and tried to feed her that. It was clear she had never eaten solid food before as she had no idea what to do with it. We then blended it and tried to spoon feed that to her, and, as you can see from the photo, more went out than in! She is drinking bottles of Pediasure right now and we are blending up her meals and putting them in her bottle as well. At the same time, trying to introduce solid food, but she hates that and tries to make herself gag, so it has been challenging. We haven't had her very long, and so far it has been a big struggle to get enough calories into her. I think some of this is related to having a rough transition and not understanding where she is and who we are. Today she hardly drank anything and we have spent a lot of time rocking her and trying to get her to drink. Please pray for progress with this! We want our baby to have a full tummy!

Jasmine and Cedar both learned how to feed themselves in 2013 after joining our home. Following the Indian way of eating, our children don't use utensils but use their hands to feed themselves. We actually tried teaching some of them with cutlery as we thought with their sensory challenges that touching the food with their hands may cause problems, but after so many years of being hand fed by an ayah, they didn't like the feel of the cutlery in their mouths and would chuck it across the room when placed in their hand. Jasmine and Cedar all learned quickly how to feed themselves and now feed themselves all meals. All three are also very hesitant to eat anything outside of what they eat every day. Cedar will eat cake and drink smoothies, but that is it, and Jasmine won't even do that. In order to get fruit into their bodies, we have to mix the fruit up and pour it on their rice. They will eat it that way, and some of the kids show preference when their rice has fruit juice mixed in, even though they won't eat their fruit unless it is mixed. 

Chloe is our newest self-feeder, and I am so proud of her! As soon as she moved in with us, back in September, Tori and I began trading off meals, sitting with her and feeding her hand over hand. At first she didn't seem to grasp the concept at all. She would scream and cry because she wanted the food so badly, but if we paused, waiting to see if she would take the initiative to scoop the food and bring it to her mouth, she would instead just reach for our hands, wanting us to help her scoop. Slowly she learned how to put the food to her mouth on her own. We would help her scoop, then tap her hand and she would feed herself. For four months we did this three times a day between Tori, myself, and any volunteers that were able to help out, and slowly we were able to fade the prompts.  I got a message from Tori on January 20th, a few days before I arrived back, saying that after switching Chloe's food into a larger bowl which gave her more space to scoop the food, Chloe had fed herself breakfast for the very first time! She is now feeding herself all meals. Go Chloe!!

So those are some of our experiences on our blind children and their reactions to food and feeding themselves. We are going to continue working at exposing them to new foods, and we hope that one day soon Charlotte will be feeding herself, like Jasmine, Cedar, and Chloe have learned to do! And most importantly, that all the kids will try new foods and not be scared or anxious during eating times.