1 Year IFSP Update

 UPDATE: I felt the need to come back and update this post as we have learned that Audrena's Usher Syndrome diagnosis was a mistake. Here is the post where we learned she does not have Usher Syndrome.

Monday was our annual IFSP review meeting. The team wrote new outcomes, and I mostly watched. I was a little under the weather with a bad case of laryngitis, and Randy wasn't able to get away from work. Plus, I have said before that the goals are not my strong point. Thankfully, we have some very experienced professionals! Some of the things we will be working on with Audrena in the next year are ling-6 discrimination and using 3 or more words to express her wants and needs. Those things seem pretty simple on the surface, but there are plenty of things to work on behind the scenes that contribute to Audrena's overall success.

We also discussed Usher Syndrome a bit. Audrena has Type 2C, but I think she must be an unusual case. For those who might not be regular readers, Audrena is missing two out of the three semicircular canals in her vestibular system. They just didn't form. So she has poor balance, much like people with Usher Syndrome Type 1. Our Audiologist explained that balance is made up of three components: the vestibular system, vision, and proprioception. Basically, her proprioceptive sense will be all that is left when her vision starts to narrow. Things like gymnastics are actually very good for her because it will help her learn to compensate. Audrena's physical therapist already does a phenomenal job working on balance-related activities with her. He sets up obstacle courses with stairs, uneven surfaces, balance foam, etc. The new physical therapy goals included things like working on walking stairs without a handrail and jumping.

One of Audrena's SLPs asked how Usher Syndrome will affect literacy for Audrena. My answer was that hopefully she shouldn't have to worry about that in the immediate future. The Usher expert that we met with a few weeks ago said that most patients still retain enough central vision to read even at 50 years old. It was a valid topic of discussion, though!

We also discussed the upcoming CI surgery and whether we should expect the new "ear" to fully catch up with the first. Hopefully it will happen, but there are certain milestones (18 months, 24 months, 3 years), and we've already sort of missed two of them with the second CI. With surgery approaching in less than two weeks, we are just praying for a successful implantation and will worry about catching up once that second implant is activated.

Also, we did check out the preschool classroom that Audrena will be in next year. Our Audiologist and SD School for the Deaf Outreach Consultant looked at things like class size, carpeting, wall coverings, curtains, and the presence of a soundfield system. I will fully admit that the idea of transitioning out of Birth to 3 Connections and into the school district scares me. It's unfamiliar territory, and I don't do well with that. So I guess it's a good thing that I have a year to educate myself! And thankfully Audrena has a fantastic team working hard to ensure that she has the best possible learning environment! We are incredibly grateful for every single person on Audrena's team.