I thought I would make about Billy's cochlear implant and audio visual therapy progress.
Well the implants had their first stimulation in July. I cannot believe how much time has gone by since then. Since turning them on we have continued audio visual therapy (AVT) twice a week. The point of the AVT therapy is to help him to start relying on his hearing and learning to listen.
Initially, Billy was surprising everyone with how much he knew and understand. Billy has auditory neuropathy spectrum disorder. Kids with this disorder are different than kids who are completely deaf who get implanted because kids with auditory neuropathy have some type of hearing prior to being implanted. For those who don't know, auditory neuropathy spectrum disorder is a hearing disorder which was allowing him to hear sometimes and not other times. For example, when you are listening to the radio and it goes to static, you can hear some of the broadcast but it goes in and out. Well that is basically what hearing is like for Billy. There is a faulty signal somewhere in his auditory nerve. The spectrum is so big and we do not fully know if Billy was on the mild or severe side. After he was implanted it was obvious that he was hearing enough to connect some dots. Additionally, since he has been implanted he has found ways to communicate that he did not have before. That was our number one most important goal.
So Billy communicates in a way that his dad and I can understand his wants and needs most of the time. People who spend a lot of time with him, like grandparents, therapists, etc. can also understand some of his communication. I suppose it is accurate to say he has unconventional communication and some conventional communication. Meaning that, the world around him that does not know him like we do does not understand everything he tries to communicate however does understand some. His conventional communication skills are for sure growing, which is huge for us. So here are the multiple ways Lil Bill communicates.
Billy still relies alot on his eyes for communication. His CVI (cortical vision impairment, which is a whole other blog post) is pretty mild which makes it easier for him. I would say his main form of communication is eye gazing. For example, we recently got a dog named Roxy. Roxy and Daddy like to play and wrestle alot. Lil Bill loves watching them, he cracks up and thinks its hilarious. When I am sitting with him he will start laughing at them and then look at me and then back at them and then at me again and I will laugh with him about it. What he is really saying is, "mom look at them go how funny is that."
Another example happened just the other day. Lil Bill and I were out shopping for a birthday present for Big Billy, we were looking at pajama pants. I went through the isle and held up different options for Lil Bill. He would look at all the options and then look at one and smile. He did this repeatedly, and always picked the same pair of pants with multiple other options. Occasionally I would ask him if he was sure, and he would say yea. So that's how he picked out Daddy's birthday present. They were bat man pajama pants by the way, in case you were wondering.
As I said above, Lil Bill said yea when were picking out a present for Daddy. He is starting to use his voice more that is for sure. With his low muscle tone in his trunk and neck, because of his cerebral palsy, it takes alot of umph to vocalize. But boy does he try! He has alot to say. He says yes and no and also says mom and has said dad, and its safe to say all were meaningful. He has said more, dog, cat, hi, bye, and bubbles. All were are appropriate times however he does not vocalize any of those words on the regular. He is really master waving bye bye though. If someone says bye bye or he sees someone wave he lifts him arm right up and waves his hand. When he first starting doing this it took him alot of time to get his hand up because of his arm being so tight because of his cerebral palsy. But he is becoming very quick with it. It just melts my heart.
He also has done some ASL (signing). Not much though. His cerebral palsy does make this difficult. But he has signed eat, more, mom and dad. He is also responsive to these days as well by saying yes or no. As you can see he wants to communicate so bad that he is utilizing a little of everything to get there. Others noticed this too, so all thought why not give him one more way.
Recently he was evaluated for a communication device. He was a rock star during the evaluation. During the evaluation they used a computer that was hooked up to a switch. To operate the computer instead of having to use a mouse or a keyboard, he could just hit the switch. The switch allowed Billy to be involved in everything. They say songs that required Lil Bill to select the right animal, and he did almost every time! They also had a switch that helped him read a book. He was so happy and proud of himself. He was smiling and laughing with everyone in the room. I wanted to cry, he was so happy and so proud of himself in a way I have never seen before. Some of the professionals that are involved with Lil Bill I feel are such blessings, they are working with him and giving him access to communicate and be part of the world around him, and he was loving it and I will always be grateful to them. At the evaluation they picked out the communication device they thought would be best for him. We are waiting to try it at home, the communication device is similar to a tablet. It will have different options to chose from. Billy will touch the option he wants and the tablet will vocalize it for him. There is a place that is close to us that loans out adaptive equipment and technology. We will be getting one on loan, hopefully soon, and if it works well for Lil Bill we will go through the insurance process to get one of our own. I can't wait! We have been using one in our AVT therapy sessions the last couple weeks and he is doing great. Positioning him in a good spot so he is able to physically operate the tablet is our biggest struggle. It is hard for him to bring his arms up due to his CP. Positioning is also important because of his CVI. So positioning Lil Bill in a spot that he can move his arms easily enough to operate the tablet while keeping the tablet somewhere he can actually see it and see the option he wants to hit is not easy. I am not going to lie, it is extremely difficult to find a good position and spot. But I am very hopeful we will get there. No doubt in my mind we will find a way to make it work so Lil Bill can use a device.
After seeing how happy it made Lil Bill to operate the switch, Santa is bringing him some switch adapted toys! These adaptive toys are pretty expensive so I am determined to figure out how to adapt them myself. In the meantime I found the cheapest website I could, where we purchased a switch, a battery converter, and two already adapted toys. One of the toys will also react when Lil Bill vocalizes which is so great too! We are planning on using the battery converter to adapt a battery operated toy that we already have at home.
All in all, Lil Bill is doing so amazing from this stand point. I remember how scared I was about making the decision to get the cochlear implants. I didn't know if it was the right thing to do, I didn't know if they would help him. Now, I can't imagine if we didn't get them. We never would have known how much he knows and understands. With all his other limitations it was hard for him to express to us what he was understanding. I think about that all time. If we never would have gotten them we never would have known how smart he is. I mean I thought he was smart, but he is really smart! I am so excited to see him take off after we get the communication device.