This morning Simon was given his first test as part of an evaluation for an IEP (Individualized Education Program). He’s been receiving speech therapy through early intervention (EI), but will be turning 3 soon, which means he must transition out of EI. His testing today was to determine if he has any developmental delays. I was somewhat worn out by the time the 2 hour test was complete. Simon is very aware when he is being evaluated or when his answers or responses are being monitored. As soon as we walked into the room and sat down at a table with an unfamiliar person, he decided he was not going to be very cooperative. Brad and I were sitting there with the test administrator trying to convince her that Simon does in fact know who his Daddy is and how to throw and kick a ball. The fact that he managed to do everything with the ball BUT throw or kick it was actually quite impressive. Yes, he is a toddler and being stubborn does come with the territory; however, I believe a part of his aversion to testing is shame that he cannot do what he is being asked. When the tester said to Simon, “What would you do if your house caught on fire?” or asked him to perform a task that he could do easily with a demonstration but required instead listening comprehension that he does not yet have, it hurts my heart for him. He did utilize the word “no” about 100 times, so he definitely has that word down pat! Simon will have additional testing in the upcoming weeks, so keep us all in your prayers that we will get a good picture of his needs.
On a related note, we received word last night that a bill has been introduced into the Alabama House and Senate (again) that tries to influence how our son and other children with hearing impairments communicate. Yep, you read that correctly. As if it isn’t hard enough getting services Simon needs to address his hearing loss and resulting speech and language delays, we have to worry about potential state legislation that would meddle into our ability to choose. This fight within the deaf/hard of hearing community is something we became aware of once we realized how important it was for Simon to have the appropriate specialists monitoring and providing treatment for him. Basically these bills have a heavy emphasis on the teaching of American Sign Language (ASL) for the deaf/HOH community. Do you communicate with sign language? I sure as heck don’t, nor does anyone I know. Why should my son be influenced to learn sign language when none of his family, friends, peers, or teachers do? We have chosen listening and spoken language as Simon’s mode of communication. We feel he is perfectly capable of communicating through speaking and listening (with hearing aids), and that this mode will provide him the most access to communicating with others throughout his life. This isn’t about which form of communication is “right” or “wrong” but rather an individual (or family’s) right to choose. The problem is this bill gives preference towards ASL by mandating oversight from organizations that are ASL-minded and failing to ensure equal representation of other modes of communication. Not only that, the bill is redundant, as there are already mandates in place to monitor children who are deaf and hard of hearing. This further confirms another agenda outside of simply helping ensure deaf children have access to language. Please pray that HB189-2018/SB141-2018 do not move any further towards approval. Contact me if you would like more information about our family’s personal experience or for more information about the the bill.


