Elias has been doing well overall. His days this week have been filled with walking walking and more walking. We hope everyone had a chance to view the video from this past Saturday. That was a VERY good day for him. Probably the best he has felt in quite some time. He is enjoying going to the backdoor in the kitchen and looking out into the backyard. He figured this out a few days ago. Yesterday, while it was snowing he was just standing there watching the snowflakes fall. You could tell he was intrigued, but not sure what to make of it all.
We have also noticed an increase in his babbling and the variations of sounds Elias is producing. A positive sign perhaps? It is very close to being jargon, which is the next progressive step in language. We have identified sounds of “B”, “M”, “D”, & possibly L, as well as two forms of “A” sounds ( like in at and ah). The fact that his babble alone is increasing is positive. Children who are actually deaf tend to babble, but then go quiet. We are continuing our evaluation process with the assistive-technology center at Children’s. After our last consultation it seems like we are going to be staying with a low-tech system. Katharine is building a communication book that has Velcro attached board maker pictures & Digital photos of common items. She is using an art portfolio that folds into a table top easel so he can flip pages, find what he needs and either points to it or pulls it off and hands to us. As he learns the signs that will be implemented as well. To be making some positive headway in this developmental area is refreshing. It has been full of frustration and finally some glimpses of light are appearing. As always we are cautiously optimistic. Being realistic has kept us from being overwhelmed with set backs in the past, so the same is applied here.
We also met with his developmental pediatrician last week. As she put it, “we are walking out of this visit with more questions than we entered with.” She is very pleased with the progress Elias has made since she saw him last in April, but she is more focused at the moment on the things he isn’t doing and trying to figure out why. She is requesting an Intensive Level Evaluation through Elias early intervention program. Her recommendation for this is defined for program development – which is fancy speak for what services & focuses he needs. She is actually a part of the team that does these evaluations so she would get to witness first hand versus reading a report. Yet another example of seeking out through advocating the best doctors we can get for Elias! may 1st ends his eligibility for these services, so there is a sense of urgency. Her concern at this point is that the schools are not going to have the resources to adapt for Elias. He is slated to begin pre-school this fall – hard to believe I know. She knows it will be a challenge for them and potentially a failure. There is also the fear of him being labeled to open doors of opportunity for more assistance in school, but could be harmful down the road. We are definitely at a definitive crossroads where decision will need to be made. more information is needed to at this point to clearly define Elias, his needs, and more importantly the reasons why certain skills are slow to emerge or come across counteractive. We will be writing more on this topic soon. We are still researching, learning and trying to piece all this together. It comes across more negative than it is, but it is vital to his success as a student so it is shifting to a very high priority due to timing. Communication is still the most hindering issue.
Thanks for reading. Let us know what you are thinking! Leave your comments below.