Augmentative Communication Evaluation

It has been a year since we had our last evaluation for an assistive technology device for communication. The initial assessment was that Elias was not really ready functionally for one. Well a year later we have seen tremendous improvement in Elias' abilities. So it was decided by the team and ourselves that another evaluation and different opinion would be appropriate for Augmentative and Alternate Communication devices (AAC) as communication assistants. When we wrote about our evaluation a year ago we referenced Stephen Hawkings as an example of a person who used a type of AAC. For Elias, it gives him a voice that can eventually connect needs, thoughts and expressions. Right now he is communicating very basic needs and wants, but little more. They are like one word sentences with the use of the picture exchange or gesturing.

Our  evaluation session was very informative and extremely helpful in determining where we are in the process and what we can do to get him ready and able to use one effectively. The main reason it is important to ensure he is ready for an AAC is that the devices are typically priced around $7,000 or more. Insurance funding for some or all of the cost can only be submitted once every 5 years. Therefore it is important to find something useful now, but has room for growth.

We have followed and implemented many of the suggested strategies by the first set of AAC evaluations with success, so we are on the right path. This much we know. This latest session told us we are close, but not quite there. So funding requests for a device is still discouraged. However, there are some alternatives that are highly recommended as transitional tools. The technology and concept of Tablets, like the iPad for example has really opened the door for children. There are now several applications which function similarly to their expensive counterparts-yup, the saying is true, 'there is an app for that.' After watching Elias engage with a tablet with amazing proficiency she felt that he was indeed ready to move into this direction. Elias is more interested in a dynamic display , versus the static nature of just the picture cards. While he responds well to those picture cards he is obviously highly motivated by the dynamic screen. The touch screen of a tablet is more easily achieved for Elias even with his hand and arm malformations. He can even eventually be taught the use of an adapted stylus in addition. She is impressed and pleased with Elias' intent to communicate in addition to his ability to use various methods to obtain the results he is seeking. At the end of the session she gave us a very confident and strong recommendation on device and application software that would  most optimally suit Elias' needs for now. Her device suggestion is a iPad2 (32 GB suggested for library expansion)  with the use of the GoTalk Now application. This program provides the basic use for now and the growth needed as he develops more skillful use. It is also highly customize-able with unlimited digital photos and additional resources. It will also be necessary to find a very sturdy case (we have been given a very good recommendation here as well - military grade protection too), to protect the investment since kids have a tendency to drop them.

So now that the recommendation has been made it is up to us to figure out how to make this happen. We have done some searching to see about grants or other funding sources, but have had no luck. Many of the programs out there we have found are specifically geared towards Autistic children or Asperger's Syndrome patients. The only funding source the social workers have been able to identify as a potential is a waiver in our state especially designed to cover equipment need expenses and adaptable equipment. However, we do not qualify because you can only be on one waiver program. Elias is already on a medical waiver program to help cover the cost of his nursing care - let's not even go there on how poorly that has been going - so we would have to relinquish that, which unfortunately is non-negotiable and not an option. To be fair that waiver is not designed with chronically sick children in mind that need ongoing medical care. It is for children with delays without the "illness and disease." It has become frustrating how Elias falls outside of everyone's "box" of criteria. None of the Social workers or others in positions to provide information on assistance can ever find anything to help like they can many patients. It is not their fault, they can only go with what they know and learn. It frustrates many of them as well. Elias' complex needs medically and developmentally are in conflict. It is like the system can't handle it if you have both, which for serious medical issues and the amount of time in a hospital like Elias has had, delays are inherent. We will continue to search for a way but it seems that we will need to find a way to purchase these things out of pocket. Discussing this with his school and therapy teams, they have other clients who use this type of transitional material and they are pleased with the positive impacts they have seen with those children. In addition to using the iPad2 as a transitional AAC device there are many other educational uses and tools that his preschool teacher and therapist have said they would likely take advantage of having available.

This is the next step in Elias' total communication approach. The ultimate goal is of course for Elias to  become verbal, but realistically that is still years away. He still has a great deal to accomplish on the listening side, but with the progress and verbalizing we are hearing from him, the future is bright. With continued Aural Rehab (listening therapy) and speech therapy along with the addition of these new tools Elias will become more independent from a communicative point of view. Creating that independence is extremely important in his overall development. With the progress we have seen over the past year we have seen equal explosion of positive development in all other areas. This will only continue if we keep moving in this direction. That is why we must make this happen regardless of the sacrifice it takes from us to make it a reality.  

Creating Total Communication for Elias!

As you know we have been working with Elias to develop a total communication system because of his hearing loss and limited response to amplification. It has been quite a process that has involved 3 audiologists, 2 speech therapists, 2 occupational therapists, 1 assistive technology therapist, 1 aural rehab specialist and 2 doctors –ENT & Developmental Pediatrician. All of these 11 individuals had a different role necessary to create a system that will enable Elias to effectively communicate through various means and methods. It has taken more than a year with this enormous team to finally achieve some success.

What is total communication? This is a system that incorporates various modes of communication. Sign Language, auditory Language, picture exchange, and assistive technology –use of computers, switches & other various devices. We have been steadily working on each of these components to develop Elias’ total communication process. At times this process has been frustrating for all involved, including Elias! With so many hands in the cookie jar and nothing to facilitate bringing them all together there were differing interpretations and implementations of strategies. Some of these were contradictory and went undetected for some time. Reflecting back that has had both positive and negative effects. The positive effects were that tools were given to Elias, but at potentially inappropriate times. Putting the cart before the horse is you will. It was prudent and appropriate when focused on isolated roles, but putting the big picture together it did not always fit. Eventually, these tools would become appropriate. It was just making him understand that he already knew this, it was just being used in a different context from what he was used to. While this is seen in many areas of development with communication it was making things harder for us often times confusing him to a point we would have to regress to build it back in appropriately.

A Full Week

It is the end of another busy week, exhausting week. We had appointments everyday this week (some days multiple), except for Friday. Most of them

were various therapy appointments, with IVIG and some research lab work thrown in the mix. Health-wise Elias is doing well for the most part. We just finished another 3 week course of vancomycin (second course in 6-1/2 weeks) on Monday for C-diff and already we are seeing the beginning symptoms of a flare up emerging. I imagine Monday morning we will be calling GI for the next plan to try and beat out this very chronic issue. There has been some conversation between Elias GI doctor, His BMT doctor and the chief doctor of infectious disease on alternative treatments. Probiotics have been mentioned in the past, but BMT would rather try other options first. We do not fully understand the reason behind the reluctance, but she is a VERY good FA doctor that we trust explicitly. She is not 100% opposed, but would rather not jump right in if there is an alternative, which apparently does exist. So we will place this in their very capable hands and see what comes next.

Winter Storms, IFSPs, & developmental focus

We are in the middle of another Winter Storm. Depending on the weather forecast you pay attention to it is all over the place in terms of severity. It looks as though we will get 4-8inches. We finally got rid of the Christmas snow just yesterday. We saw the green grass for the first time in a long time, but now it is covered in white again. Elias spent sometime this morning watching the snow. He was standing at the backdoor in our kitchen just looking out curiously. As he made his laps around the main floor, he would stop and look out with each pass. It was very cute and interesting to watch. Speaking of cute & Interesting, have you seen the video of Elias walking backwards yet?

Assistive Technology Communication Evaluation

Tuesday Elias had his long awaited evaluation for communication with assistive technology. To give you an example, think Stephen Hawking. The hope is for this new team of occupational therapists and speech therapist to identify an appropriate device to help Elias with his total communication efforts. Yes, we are still working on basic signs and of course the Aural Rehab in the hopes we can evoke an auditory response. This is just an additional layer of assistance to try and keep Elias as close to on target developmentally as possible. Also with Elias’ arm and hand malformations (mainly the missing thumbs) some signing may be difficult to adapt or be translated properly down the road. They spent several hours watching how he manipulates and engages various toys, situations, and most of all people. They were very impressed with the ability he has with his hands and his fingers. We played with a few different computer devices that have the ability to grow with him. This is where the challenge falls. Insurance will only cover one device every five years. So you have to really think ahead. Finding something that is functional now but will still be advanced enough for him when he is seven. That is tough! There are also trial periods that must be done before the final device choice is made. This process is going to take quite some time. With our four follow-up visits planned and the difficulty getting in it is looking like it will be next spring before this process really makes a push. That was a little disappointing. We were expecting something that was going to be done with a bit more urgency. Especially since the developmental pediatrician pushed so hard for us to do this to establish some form of active communication for Elias. They did suggest that we try a touch pad, much like you find on a laptop. They feel this or a modified stylus will be his ultimate facilitator with the proposed device, whatever that may be. We are hoping that our early intervention program will have some available to use. We did write our IFSP with the potential of exploring assistive technology tools versus specific ones. Wish we had more information, but it is a slow step in the right direction. We do not even have an opportunity to go back for our next follow-up until mid-December. That was the first available, crazy!