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.  

It Has Been A While

From Halloween 2010

Halloween 2010

Elias took advantage of Halloween to give Daddy a scare. He had been having an off day yesterday. He seemed more tired than usual and a bit moody, so we were already more watchful. While napping his head began to shake and his eyebrows moved up and down rapidly. Within seconds his head was shaking faster. Initially my heart sank, another seizure. I quickly began trying to wake him, with a single toggle his eyes opened I put my hands on his shaking head and it stopped. Thank God. Had it been a seizure it would have kept going. He did seem to have a bit of a headache so we gave some Tylenol. He began to feel a little better shortly afterward. We were thankful it wasn't another seizure and feel like he was feeling a really bad headache or migraine in his sleep. The head shaking was just him trying to soothe himself some. Unfortunately, headaches and migraines have become increasingly common. They are a side effect of his IVIG as well as a new normal, as we are told with the seizure problem. Neurology told us two things in his last visit with them. First, he is more prone to have seizures when he is asleep and potentially when sick. Second, we need to lower our threshold on giving Tylenol. Since Elias is non-verbal, while his communication has improved headaches are often disguised and difficult to read. We are all getting better learning the subtle cues. It is a process that we are constantly making progress. Needless to say there was no dress-up or trick or treating for Elias. We had not planned on the trick or treating anyway. First, he can't be out that much and second he can't eat by mouth anyway. Finally, being non-verbal and not hearing he has no understanding of what the heck holidays are anyway. Last year we sat outside for about 15 minutes with him so he could see the other kids dressed up. He didn't seem to care too much, hahaha. Just FYI he still fits in his Halloween costume from last year!


It has been so long since we have been able to update. It just seems to be getting more and more difficult. Time has been a premium and we have been in a survival mode with the loss of night nursing over the past few months. We have had to juggle staying up all night and then struggle not being able to sleep with appointments and therapy during the day. After 7 weeks we finally have some coverage, but staffing continues to be a problem and seemingly impossible for the agency. Unfortunately there is no alternative, they are still the only agency accepting vent patients. Our advocacy woes with them continue and their incompetence shows daily, but what can we do? We have caught them yet again in an outright lie about how diligently they are working on the case, but they don't care and there is nothing we can do. Unfortunately Elias care needs have intensified overnight and is much more critical with the seizure risk protocol. These are the doctors words, not ours and we are working with her to try and enlist her help in pressuring the agency over Elias safety. We have to try, but not expecting it to work. They have a mind set and it has not swayed in the almost 2 years we have been with them. The excuses are the same, yet there is no action on their part in an attempt to change and improve the issue. Instead they are content with being passive and using the same excuses repeatedly, yet contradicting themselves by telling parents 'we don't hire nurses unless they can work nights and weekends.' If this were true then we do not understand how there can be a problem staffing weekends and nights. The nurses that are working here have never been told they "HAVE" to work weekends, they were given a choice. When they said no, the agency did not push. They simply said 'okay.'  I'm going to stop there I don't want to get into a rant. Just know it is growing tiresome and it is frustrating knowing you are helpless to change the situation and at the mercy of a failing system. We are not the only family like this. We know countless families in and out of the area experiencing similar issues. While that makes us feel a little better knowing it is not just us demanding too much, it is sad that no one is raising a red flag for such a widespread issue.

Preschool - the past two months have, as expected been a learning experience. As we mentioned in the
previous paragraph and post with the look of our calendar the schedule is packed! We knew it would be busy and it hasn't disappointed. It would be more manageable if we were up 24 - 36 hours at a time. We have managed quite well all things considered. A lot of daily chores and cleaning has been sacrificed, focusing on the priorities, but that is what you have to do when you face challenges. The biggest issue has been scheduling. They all want to come at the same time or limit the days they can come. Again we are working through this and are making progress. We have definitely learned a few things that we will be asking to avoid next year and will fight to write it in his IEP next year. The biggest issue is the co-treats. While these are effective periodically between 2 disciplines, every time is over kill and ineffective. OT & PT especially. They often are competing for Elias attention when they both are here. They each have very different focuses and while they claim to do this often it is not working for Elias. He ends up running away from them and standing in a corner. It stresses him out a bit and very overwhelming to have someone work with you and then suddenly another person pops in the picture trying to make you do something different. You can see it in his face. We have addressed this and they disagree with our assessment. A few weeks ago the PT was forced to come out alone and she commented how engaging,  productive, and focused Elias was. We took that opportunity to stress our point again, but it was brushed aside it seems. The argument we are presenting now is that he is approved to have two 45 minute sessions of each, PT and OT. By co-treating he is being cheated out of time, given that each of them is battling for his attention. It is comical to watch, but the reality is it is not effective. We can't believe that no other parent has ever brought this up. He is only getting 90 minute session with both simultaneously with the focus is back and forth. Not the 180 (45 x 4) That is not giving him the time he needs, or any patient for that matter. He is likely not going to reach his goals on his IEP due to this and while it is a set back for Elias, it just may help strengthen our advocating point.

Elias development overall has been incredible. His communication is constantly improving, expanding and evolving. Gesturing and him physically taking us to an item he is requesting has become a knew favorite form of communication. Just like we use different methods to request things, he too is learning to choose from the various tools - picture exchange, gestures, signing - for what he wants. It is amazing to watch. His joint attention is also becoming more purposeful. We are beginning to work on getting him to understand that we also need to have the ability to decide when something is all done or finished. Not an easy task when you have no ability to explain why you need to stop and activity. He simply sees it as done. Impressively he has grasped the concept surprisingly well given that barrier. He reacts appropriately with mild tantrums or displays of displeasure consistent with a 'typical child'. His independent play has never been  a problem, and we are seeing continued growth in this area as well. Baby is a word he says quite often and he also says something that resembles bubbles. Bubbles of course being one of his favorite activities and one of the most motivating tools we have in teaching.  His saying these two words along with many sounds (ah, a, b, ch, du, da, eg, j ,la, lu, m) tells us that the listening therapy (Aural Rehab) is now showing dividends. We have some recordings that we are trying to put together to post. We have been doing AR for over a year and a half and the progress has been questioned more by the providers than us, but it has been reminded that this is going to be a slow long process. Once we all focus back on that point and see these things, most of which he has just started in the past few weeks it is reassuring and promising. It may take five years but if we continue to do the things we do and work fervently there is hope he will hear and even verbalize. That is truly a blessing and melts away the stress, mental and physical exhaustion. Elias continues to make us proud and thrive beyond expectations his medical limitations should have. There is a great deal more that we could share, as so much has been going on. These have been the key points. As always we keep on pushing. Thanks for your patience, your thoughts, and your prayers.

Art Show Benefit

Last week was a huge week for Elias. His outing to the zoo, Grandma M & Uncle Ryan visiting, and of course our the Art Show Fundraiser that was being put on to benefit Elias and Fanconi Anemia Research. With all that going on we paid for it this week being bogged down with a little more intense schedule to make up for the previous week. All well worth it. The week was amazing for Elias!
Elias was in attendance at the Art Show. We again struggled with the decision to break the rules for the second time in three days. Given the importance of the event, the setting, and a mostly adult attendance we felt like we could really control the environment. Elias was certainly the man of the evening. Dressed in a light blue dress shirt with navy pants and his red Mickey Mouse power tie, Elias captured many hearts. He was adorable! If you follow us on Facebook you may have caught some photos through the course of the evening. If not Do not Fret. You can check the ones we had the opportunity to capture here. He made it through most of the evening before we had to change him. It was very hot with all the people. Towards the end of the night there were raffle giveaways. It was decided that Elias would do the honors of picking the names out of the box. You can see a video clip here of one of the drawings. The event was wonderful. We had an opportunity to explain and share FA with people as well as witness some amazing art work. The group of artist that put this all together did an amazing job and we are very thankful for their time and talents. The show runs for a month. It was a very touching and humbling experience. Elias was received so positively and inspired many. There are so many businesses that donated items, individuals that volunteered and people that deserve a huge amount of thanks. To everyone that participated at any level and attended, we are most gracious for your support.
As we said a very exciting week and Elias did remarkably well. It was worth breaking the rules a little and taking a chance. While it was a success it is something we can not allow ourselves to be lured into a false sense of security. We may try another outing in the Fall to the aquarium, but until then it is back to normal with protective isolation. We were blessed to have these opportunities and Elias had a wonderful time. We will venture out again in time, we just do not want to press our luck. The ability to appreciate this is much more rich because of the circumstances. Thanks to all for the wonderful showing of support and comments. We hope his experiences touched your lives and hearts as much as it touched ours. 

The past week or so has been a bit low for us after suffering a key advocacy defeat on a very important issue for Elias. As we went through the paces of contesting the decision the more people we discussed this with, the more demoralizing this whole effort has become. Even his medical team that strongly recommended this is struggling to come up with the next step.

Denial by cookie cutter

When you make a cookie with a cookie cutter you spread your dough out flat then place the cutter shape and press firmly down. You them remove the excess dough from around the cookie cutter leaving only the cut shape. You are discarding the left over dough for it is not necessary to create the desired shape. Now think of this process again, except the dough represents a child, the cutter shape the portion that the bureaucracy – or bureaucrazy as I call them – wants to look at. They make their shape and discard the rest of the child for consideration. I call this the cookie cutter effect.