Nolan's Education, Post Surgery

There are approximately 3 weeks between the day that Nolan had his surgery and the day that his cochlear implant will be turned on. We are using these 3 weeks, and the week before he had surgery, to prepare him for hearing. We are making a major push towards teaching him some signs that are important that he still doesn't know, while still working towards some of our old goals. Knowing signs for important words will help him so that when he hears, he isn't starting completely fresh. He will be able to associate sounds with signs and will already have a form of language that we can spring off.

We have had a lot of help from experts guiding us in the right direction with him. I have been reading several books that are giving me ideas on helping to guide him behaviourally. I have been emailing with teacher friends for creative ideas on appealing to his kinesthetic learning style. I have also been in contact with a woman "Borrowed Mum" who has CIs and whose son has CIs, and she has been explaining what is most important for Nolan to know before his cochlear implants get turned on. Here are some of the things we have been doing with him lately...

Colour and animal signs: I have been told that the most important signs that Nolan needs to know before his CIs are turned on are colours and animal signs. We have decided to focus on 6 colours: red, blue, green, yellow, black, and white, and 4 animals: dog, cat, bird, cow. After he is hearing, the animal signs will come into great use as teaching him animal noises (hearing/recognizing them and making the sounds himself) will be a great activity in his speech and language therapy. Colours are some of the first things that young toddlers recognize, however Nolan missed out on that developmental milestone not being able to hear the names of the different colours. In the photo to the side, I hid the blue and red crayons around the room. I would sign to him a colour, and then he would have to go look for a crayon in that colour and bring it to me. When they were all found, we coloured in the circles.

Currently, aside from the above signs that we are working on teaching him, these are the signs Nolan knows and uses: bath, help, eat, drink, pee, poop, school, go, play, sleep, pray, wait/stop, yes, no, A-G (letters), his name, Lily's name, Molly's name, walk, and Mom (me). When he came to us in July, he knew only eat and drink. 

Tactile activities: As much as possible, I have been trying to incorporate sensory and tactile activities into Nolan's day. He learns better when he can touch and feel and do. We started out with a fun water game. I filled up two buckets of water and dyed one bucket of water blue and the other red. I gave him a selection of toys that were coloured either red or blue, and he had to do the sign and put it in the proper bucket. Once they were in, I then signed to him a particular colour and he would have to hand me an object in that colour. I included some clothes as well, as he loves "washing" clothes. So he worked on his colour signs, his sorting, and had some fun water sensory play too, as he splashed around and cleaned the clothes!

One of my favourite activities we have done has been the rainbow spaghetti game. Tori and I put a bunch of long noodles into hot water to soften it and separated it into 4 bowls. We set it out on the floor along with 4 packages of food colouring. We asked Nolan to find the red food colouring by doing the sign, and he would have to find the red and give it to us. Then, he would get to drop the food colouring into one bowl. We repeated this until each bowl was a different colour (red, blue, green, and yellow). This was the first time we introduced green to him. He had known red and blue for about 5 days and had been introduced to yellow that morning. Once all the bowls were coloured, we played different games with it, for example letting him pick up some of the noodles and mix it around or put it in a different bowl when he found the colour we were asking for. He was very motivated by this activity and so had great attention and got the colour signs correct almost every time! Once we were finished, he spent over an hour playing with the noodles, squishing them between his fingers, moving them from bowl to bowl, having a food fight with Lily, and then cleaning the bowls in the water. It was a fantastic activity that really engaged him!

Phys-ed and creative play: Kids learn by playing (this post is brilliant). Nolan had one game that he played over and over again; he would find a bag, fill it up with toys, and crawl around the balcony waving bye and blowing kisses to everyone pretending he was going on a trip. I recognized that Nolan needed to be challenged in his play and that he needed more physical activity, particularly in combination with his learning. We went to the store and bought a giant slide with a basketball hoop attached to the side. We also made a Wish List of even more toys to challenge the kids' imaginations, totaling $450- yikes! The kids were so excited when we showed them the slide/basketball hoop. After a little while of playing, I brought it into the living room and set up a school game for him.

Before he could climb up the steps on the slide, I put out some letter cards and would sign him a letter and he would have to hand me the corresponding letter card. Then he took the card, climbed up, slid down, brought it through the tunnel and to a bowl at the end of the tunnel. There were balls waiting for him there with various coloured paper taped to them. I would give him a colour sign, he would choose the corresponding ball, would crawl over to the basketball hoop, shoot it in, and then repeat until we had gone through all the letters and colours. I couldn't believe it, he got every single one correct on the first try! No games, no pouting, no refusing to participate. He loved it! We were chasing each other with the balls, racing to get to the slide, and having tickle fights through the tunnel. I didn't take many photos because I was just enjoying him so much, and the photos I took don't really capture his pure happiness and engagement. He did a great job!

We are also taking Nolan to Kidihou Children's Museum 2-3 times/week. He spends time playing with other kids, using his imagination, painting, role playing, and doing school type activities with me like puzzles and letter recognition using their letter magnets. He really thrives in this environment so we are treating this as his "school" for now. 

Resources:

Pinterest Sensory ABC Activities 

Rainbow Spaghetti Play

Your Child Has a Cochlear Implant: Why Include Sign Language? 
The Imagination Tree

Conversations With Molly

For the first time in her life, Molly is able to communicate using the Yes/No app. I wanted to record some conversations we have had with her. Some of these were asked in English (using words she knows) with a combination of sign language or gestures, and others were asked through translation in Telugu. We are starting with the Yes/No app and working up to using Proloquo2go, once I program it and work out some kinks. We want to transition to her using her left arm to press the Yes and her right arm to press the No (rather than right arm for both), to make it even clearer, although using her left arm is a challenge for her.

Some days she is not interested in participating, perhaps because it is challenging for her and she is tired. She is going through a bit of a stubborn phase where she has days where she really fights us when we ask her to do things; to creep to a toy, to do school, to practice sitting, to use her communication app, even to eat. When she's doing this, she stares at the ceiling and slaps the iPad randomly, or refuses to touch it at all. Quickly many people write her off when she does this, telling me she doesn't know what yes/no mean and doesn't understand how to use the app. It makes me beyond frustrated when this happens, and I am working at being patient with her and when she doesn't want to communicate, giving her that choice, but also balancing it with the consequence of she doesn't have another way to let us know what she wants. I am trying not to guess what her needs are; she needs to tell us and that is how she will get what she wants (ex. asking her if she is thirsty, rather than just giving her a drink, or asking her if she wants to go outside rather than just bringing her out).  Most of the time she loves to communicate though. Sometimes she hits the wrong button, but you can always tell right away when that happens. You can see her eye gaze on the button she wants, and she keeps moving her hand to try to touch it until she eventually does, whereas if she presses the button that she wants correctly, she will move her hand back to her lap. We have considered just using eye gaze, but she gets so distracted that touch has been more consistent. I know yes/no isn't a lot, but it's a start and this is only the beginning!

While getting ready for bedtime...
"Molly, can I sleep here (draping myself across her body and fake snoring)?" No.
"Molly, can I sleep here (using her stomach as a pillow and fake snoring)?" No.
"Molly, can I sleep here (draping myself across both her and Lily and fake snoring)?" No.
"Molly, can I sleep here (pointing to my spot on the end of the bed beside Nolan)?" Yes.

While getting ready for bed another night...
"Molly, do you want to sleep here (lying her across Lily, Nolan, Jasmine, and Cedar)? Yes (with giggles).

 

After telling her that we are going to take her and Lily to the cinema at the mall to watch a movie...
"Molly, do you want to go see a movie on a huge screen at the mall with me, Tori Akka, and Lily?" Yes.
"Molly, do you want to watch a scary movie?" Yes.
"Are you sure? Or do you want to watch a sad movie?" No.
"Do you want to watch a funny movie?" No.
 (Molly is the most sensitive of our kids... no way am I taking her to watch a scary movie, but I thought it was funny that that is what she requested!)

On school...
"Do you like learning your ABCs and going to school at home with Tori Akka and Nikki Akka?" Yes.
"Do you want to go to a real school like Lily does?" Yes, yes, yes, yes. (pressing over and over again)

What she wants to be when she grows up. I began by telling her that when we get big and finish school, we get a job. I listed 4 jobs and told her I was going to ask each 1 by 1 and she could tell me which one she wanted to be when she grows up. 
"Molly, do you want to be a cleaning lady?" No.
"Molly, do you want to be a nurse?" No.
"Molly, do you want to be an ayah?" No.
"Molly, do you want to be a teacher?" Yes.
I found that glimpse into her mind so exciting!

On her favourite foods (and healthy appetite!), following an explanation that she can only choose one of the options I was about to give her.
"Molly, is pappu your favourite food?" Yes.
"Are you sure? Isn't upma your favourite food?" Yes.
"Is mutton your favourite food?" Yes.
"Is ice cream your favourite food?" Yes.
"Mol, you are supposed to choose only one. Do you have only one favourite food?" No.
Okay then :)

When she was feeling sick...
Molly wasn't herself one day. She didn't eat lunch or dinner and when I went to work on her sitting with her, while watching a Storybots video, she cried and cried. Mol never cries like this! Sometimes she gets stubborn and refuses to sit, but she has her stubborn pout on when she does that and there aren't ever tears. I knew something was up so I got Sarah's daughter Amira to ask her in Telugu:
"Do you feel pain?" Yes.
"Is it in your stomach?" No.
"Is it in your head?" Yes.
I then thanked Amira and thanked Molly for telling us and took her upstairs to ask some more questions. Now that I knew the word for 'pain' in Telugu I pointed to various body parts and asked if she had pain, just to confirm it was her head. She continued to say no to everything but her head.
"Molly, do you want medicine?" Yes.
I gave her a bit of pain meds and her reaction was priceless. She was so excited that she had found a way to communicate what was bothering her! We cuddled in bed together and I sang to her and kissed her. To me, this is the most amazing thing about her being able to communicate. She can now tell us what she wants and needs. Our nurse was speculating that it was her stomach and we should give her something for that, but now we know. We don't have to speculate. It's awesome!!

We have also introduced yes/no wrist bands. This is the exact same concept, but they are around her wrist so they are more portable. She gives us a high five with the hand she wants to answer with. We were going to have her just lift the hand, however often when she lifts one hand, the other goes up as well, so to make it more clear, she needs to give us a high five with the hand wrapped with the band she wants to answer with. We put the "yes" band on her left arm as that is the side it is on in the yes/no app on the iPad. We took her out to the Museum recently and she got to practice with the bands in public for the first time. It was a bit rough, to be honest. She started out fine, but then it went downhill. She doesn't seem to have the concept grasped as well as with the iPad, or perhaps it is just hard for her to use her left hand so she doesn't. She was on complete sensory overload with it being her first time at the Museum and it was all just too much. She broke down. We are going to bring her back to the Museum when it is quiet (this day there was a party and it was just too noisy and busy for her). Then, we will have the opportunity to have her work with the arm bands in a less stressful environment. At this point, she is really struggling with them. I think the left hand is hard for her to stretch out, so she gets frustrated and just says "no" all the time. I am going to try a little more, as I love how portable they are, but am not sure if they will work for her.

We are really hopeful that Mol will begin to understand that these forms of communication are not meant to be stressful, but rather as a way for her to make choices and have more control. Some days she loves it, some days she hates it. We are taking it slowly and letting her set the pace. 

Surgery Day

Na koduku,

I woke up at 5:30am on February 18th with butterflies in my stomach. The day had finally arrived. After so many months of researching, tests, advocating, and fundraising, you were going to be getting your cochlear implant.

I woke you up after I got ready and you smiled and lifted your hands up to be held. You had no idea what was happening, but you were excited. It had been your birthday the day before. You are 7 now. Such a big boy!

We didn't wait long at the hospital, and as we waited for a few hours, you spent time charming the nurses (as usual!). By 9am I carried you into the waiting room outside the operating theater. I dressed you in a cap and gown and that is when your eyes began to fill with tears. I started praying for you. You pointed to me, pointed to yourself, and did the sign for prayer. I nodded. Then you asked if you were going in the doors, and if I was going too. When I told you that I would be waiting there, your face crumpled into tears. You wrapped your arms around my neck and whimpered. Neither of us were prepared when they took you out of my arms and carried you in. I could hear your cries as they walked you down the hall and as soon as you were gone, I cried too. I knew that this is the right thing for you, but in that moment I hated it.

"Is he your son?" an older woman asked.
"Yes," I answered.
You are.
She put her hand on my shoulder.
"He's going to be okay," she reassured me.
In that moment, as I stood by myself, completely overwhelmed and worried about you, her kindness meant a lot to me.

Four hours later I put a cap and gown on myself and went to see you in the PACU. You were still sleeping, big bandages wrapped around your ear. You looked so little in bed. You whimpered in your sleep. When you woke up, I placed my head on the bed beside you and wrapped my arm around your shoulder, so you felt like I was holding you even though they wouldn't let me pick you up. We had to wait there for three hours. An hour and a half in, you began crying hard. I asked several nurses for more pain medicine, and it still didn't come. I stood up to find someone to help, and in that moment, you thought I was leaving you. Baby, the scream that came out of you is something I never want to hear again. You thrashed wildly, clawing in my direction trying to grab at me so I wouldn't leave. I never want you to even consider the thought that I would ever leave you.

We spent the night cuddling. You didn't sleep. You whimpered a lot, and cried whenever anyone came into our room. If I shifted away from you in my sleep, you cried until I groggily woke up and wrapped my arms around you again. You were still so scared I was going to leave you alone. I used the call button a few too many times; when some blood trickled from your nose, when you began crying and I knew the pain meds were wearing off, and when I needed a bucket of water to sponge you down and wipe off the remnants of the tape and cotton stuck to your body.

By the time morning finally came, your pain was under control and you just badly wanted to leave. You smiled for the first time since your surgery when I brought you to the mirror and you saw the big white bandage wrapped around your head.

We are home now. You were welcomed home by all the ayahs crowding around you and a big hug from your sister. You smiled, crawled to the toy box, found your new backpack that you got for your birthday, and began to play.

Several times during the past few days I looked at you and felt overwhelmed with love. It still blows me away how many people came together to make this surgery possible. So many people believe in you, baby. So many people love you. You don't know it now, at 7 years and 2 days old, but God is using you to change so many lives. Most especially mine!

Love you Nolan.

My Kinesthetic Learner

Nolan is an emotional, sensitive kid who can cry at the drop of a hat, or can be laughing hysterically just as easily. He hurts deep and loves deep. I hate leaving the house because ayahs can't control him and he is always getting into some sort of mischief. When I come home, I may find him fully clothed in the bathroom dumping water on himself, or perhaps having just pooped on the floor and using our bath mat to "help" clean it up. He is my baby and he makes that clear, wrapping his arms around me at bedtime and kissing my face all over. He is also difficult to discipline and hard to motivate, if he doesn't want to do what you want him to do. He gets bored quickly with activities that require sitting and he is always getting his hands into absolutely everything! I love him with a deep, special kind of love, and sometimes he frustrates me like no other child can!

Nolan struggles in school. When we first began doing school with him back in September, his attention span could barely reach 5 minutes. He would shut down after that and zone out. He couldn't complete a puzzle, he wouldn't look at pictures in a book, he had no energy or desire to colour, paint, or sort objects by various categories. Since then, with daily school at home, he has improved drastically. On some days he can do school for 45-60 minutes and he has learned so much. He has mastered many iPad games, is learning his ASL alphabets, and continues to excel at activities like puzzles, shape sorters, object sorting, and other fine motor games.

That said, many days Nolan acts out in school. He always looks forward to school and asks when he can go, but sometimes once he gets there he pretends to be completely clueless. He will put an act on as if he doesn't understand what we are wanting him to do, although we know very well that he understands perfectly. Sometimes he will cry and refuse to do what we ask him to do. He will smack the iPad with his hands, for example, as if he doesn't know that he has to drag the object to the proper place (a game he has done before). Or if he is doing the peg board, he will try to ram the peg in backwards, or will just keep dropping it over and over again while staring at the ceiling. Our tactic was to not give him any attention and to stare at the activity, and eventually (sometimes a loooong time later) he would complete the task. Between his tears, our frustration, and the amount of time it was taking to get him to do a simple activity, we knew something had to change.

We realize that he is smarter than he lets on, and also that he tends to be lazy and wants people to do many things for him. Many people suggested that he is bored and wants a challenge. While probably true, on the other hand he also needs to learn to obey and participate, otherwise getting him enrolled in mainstream school is going to be a challenge. I was struggling with finding a balance.

While at the Children's Museum recently, Nolan was engaged in play and I decided to sit him down and do a short activity. There was a wooden board with pegs on it, and you have to take the pieces and put them in the proper place to form the body of a man. We do things of a similar difficulty level with Nolan regularly at home. With him being so involved in what he was doing at the museum, I expected he would not be interested in participating at all, and would refuse as he would want to go continue playing. I was very surprised when he sat down with me, looked at the activity, attended to it, and completed it in 5 minutes, clapping for himself and then continuing along with his playing. It made me want to start thinking outside of the box in doing school with Nolan. Clearly, the museum environment, and all the moving around and creative play he was doing, was contributing to his attention and participation.

The next day during school at home I set out a big obstacle course for Nolan on the porch and living room. He began by walking to a sheep toy that has holes in it, where he has to take a string and thread the string through the holes. Fine motor can be a challenge for him, so he has to really focus on what he is doing, and he did a great job. Then he stood up and walked, working on taking big steps over small sticks that I put on the ground (something we are working on to help him pick up his feet as he walks). Next, he went and got his sheep toy and brought it to his bag, put it inside, slung it around his shoulder, and brought it to the next activity while walking. From there, he took the scooter board and got to slide it through the balcony over to the living room. The tunnel he would get to crawl through was sitting at the end of the obstacle course, but in order to crawl through the tunnel (which he loves doing) he had to complete the Sorting 3 game on the iPad, sort of like a shape sorter on the iPad. This game is one where he usually shows a lot of behavioural challenges while doing. Today, I was so excited to see that he completed it in 10 minutes, clapping for himself with each one he got correct and rarely needing redirection. He crawled through the tunnel and I gave him kisses all over his cheeks! He did great!

While doing some research on kinesthetic learners, I found that a lot of kids enjoy doing arts and crafts and working with their hands. Today we went on a walk downstairs and through the baby's home to follow a trail of letters. He carried his bag, crouched down and picked them up, until he found all the letters and reached the end of the trail. As he found each one, I did the ASL sign for the letter. Then we sat down and did some letter work. I would put some letters down, show him the ASL sign for a letter, ask him to find it, and then we would trace it on a paper, or I would draw a big outline of it and we would colour it in. I am also working on having Nolan colour in the lines and to look down at what he is doing, rather than scribbling while staring at the ceiling. He was motivated by the colouring and kept asking to colour, but he didn't enjoy it quite as much as he did the activity yesterday. There were still a few instances of refusing to participate, where he would tap all the letters at once or try to pick them all up. These behaviours didn't last as long as they do in the school room though, and he eventually re-directed and participated with the incentive of getting to colour in the letter and trace his hands. I introduced the letter "G" today, so he is now working on A-G. I really want him to learn these letters, and I think it is such a good challenge for him. Tomorrow I am going to try to do more letter work, but maybe through an obstacle course like we did the first day, to see if that works. I think I will incorporate the letters more into the game. Rather than sitting down and doing it, he will have stations in the obstacle course where, in order to continue along, he needs to look at the letters and give me the letter I am signing to him. Then he can move on to the next station via crawling through a tunnel or scooting on the scooter board, or something like that. I think that may work better than the colouring.

(disclaimer: I do not usually dress Nolan is fuzzy red pants that are far too short for him :) As it is Valentine's Day, I decided to be festive and dress the kids all in red and pink, and this was the best I could find!)

I want Nolan to continue to learn and to find a deep love for learning. Please pray as we search for a preschool that will accept his enrollment. Please pray as we continue to think outside the box to educate Nolan. In the meantime, until we find a great school for him, I am going to continue doing activities like those above with him at home. We are also going to be going to the Museum once a week, giving him an opportunity to play with other children and to use the awesome activities and toys they have there, mixing play with school.

Resources I have been reading:
A Running Start: How Play, Physical Activity, and Free Time Create a Successful Child by Rae Pica
Raising Your Spirited Child by Mary Sheedy Kurcinka
9 Ways to Teach Tactile-Kinesthetic Learners 

Do you have a kinesthetic learner in your family? Any ideas to share on new and different ways we could teach him?