Most of us (speaking specifically to other Infantile Spasms parents) that have been on this seizure infested journey for any length of time understand the idea and importance of saturating our Speech Delayed kiddos with as much communication input as possible.
Trevy's delays are way more complicated (as in he's completely missing the region of his brain that controls speech!) than just a speech delay and as such requires way more input. I have (always) talked to him about everything he does. Everything I do. Everything we do. Just like I did his siblings. Who were both early verbal bloomers. Speaking of his siblings...they are little noise makers for sure. And constantly filling his ears to the brim with language. Challenging his right brain to miraculously create new pathways. Speech pathways. Pathways that belonged to the other hemisphere which is in a jar on a shelf in some lab somewhere. Hopefully providing new data that will become a powerful tool for other families fighting the IS monster. We use sign language. Have I mentioned my passion for Baby Signing Time? PECS too...although for me this more difficult to follow through with. Constantly losing picture cards or misplacing the whole dang sha-bang. But I value PECS as a tool for Trevy, who struggles with abstract concepts. The wheres and the whos and the whats. They don't come easy for him. Things he can touch or taste are more his Speech enriching style.
I think I have my heart and mind completely wrapped around the importance of pushing him towards the ability to communicate.
I need to add that this is much easier to feel passionate about when we're seeing growth. The Post-surgery plateaus are hard on the mommy heart. And Pre-surgery I had all but given up on ever hearing his voice. I still believe without our Nightmare Miracle it's highly possible we never would have. Though I do wish I had given Trevy more Hope. If I'd given him more Hope maybe I would have tried harder. And if I had tried harder maybe we would be further along now? I know it's downward spiral thinking. I know I shouldn't go there. I know I should fully embrace what I say (and do) I believe. That Trevy's Life has Purpose and was Written by a Loving Father. But sometimes my human-ness gets the best of me. And I have regrets.
Not pushing Trevy harder before surgery is one of the them.
The whole point of this post was to link in this wonderful little read. On the topic of Speech Delay. With an open invitation to leave any Speech-y comments you might have. To be answered. By a real, live SLP!