This week is Infantile Spasms Awareness Week, which made us realize that it has been almost four month since our last update. We sat down earlier this week to try to draft an update, but realized it is difficult to adequately cover the last four months in one post. Therefore, this post will primarily focus on speech and language therapy. We will follow up in the next few days with an update on Bexley’s progress in physical therapy.
At the time of our last post, Bexley was just beginning speech therapy. We are just thrilled with the progress Bexley has made over the last few months in this area. She has such a strong desire to learn. We are also fortunate because Bexley absolutely LOVES books. She loves being read to and she enjoys having you describe and point out things in the illustrations. Therefore, incorporating speech therapy activities into our daily routines has been an easy transition. The SLP recently described Bex as “language hungry”, which is spot on because she wants us to label and describe everything to her.
Initially, we were concerned about a receptive language delay. However, in the last month or so, it has become clear that Bexley's receptive language skills are flourishing! She can identify (by pointing) animals, body parts, colors, articles of clothing; follow simple directives; point to objects/characters in books; and so, so much more. She is constantly learning something new and amazes us every day with what a great memory she has.
The SLP has explained to us that it is pretty typical to see expressive language skills take the back burner in kids like Bexley. First of all, gross motor activities take a lot of focus and concentration for her. Then on top of that she is so busy soaking up everything going on around her that making new sounds isn't a high priority in her mind. She is making progress in this area and we have recently heard her start to babble some new sounds more frequently while playing (b, d, w), which is a sign that she is getting stronger and moving in the right direction. We are learning strategies to help her build on those sounds and increase their frequency.
Until the words come, we have started using baby sign language with Bex to help her express some of her wants and needs. She knows the signs for "more", "all done", and "eat." She is able to use those signs accurately and independently. It has been a big help to get those little clues into what she wants. She can use the signs for "open" and "close" with prompting and we are working on the signs for "help", “drink”, and “up.” In addition to baby sign language, she can also shake her head "yes" or "no" in response to yes or no questions.
The motto for IS Awareness Week 2015 is Little Seizures: BIG Consequences. We strive to focus on the positive and hope for the best, but the reality is that with a diagnosis like IS many of the basic assumptions you have about your child's future are called into question. It is hard to put into words how exciting it has been for us to hear an outside professional describe Bex as smart or comment that her memory skills are impressive. After watching Bex have to work so hard for the last 18 months with her gross motor skills, it is a refreshing change of pace to see her quickly picking up on new words. It is also a relief to realize that all areas of development may not necessarily be an uphill battle for her.
Stay tuned for an update on what Bex has been working on in PT!