Tests, IEPs and Appointments...Oh My!

Not long ago, we took E for his language testing that would be used for his first IEP (individual education profile) with the school system. At age three, he transitions out of the "Beginnings" program and starts to work with the school system for his therapy. The test did not go very well.

 First off, the language therapist was not pleased that we had chosen to continue signing with E after implantation. I explained that our goal for him was to become fully bilingual and that we felt his signing really helped his language because we could input correct pronunciation of words when we understood what he was attempting to say with the support of his signing. She clearly was not pleased with our choice to go against her advice to drop signing. Secondly, she allowed an intern to perform the test. I understand that interns need to learn and practice, but this intern clearly was not well versed yet in giving the test and I would have preferred she practice on an older child. The testing took two hours...that's right...my two-year-old was expected to focus for two solid hours. We asked for a small break for him after the first hour. I think breaks should have been built in for his age group rather than having to be requested. Nothing E signed counts at all for this test, so if he was asked a question verbally, comprehended it, but answered in sign, it doesn't count. For example, he was asked to name the picture of the elephant. He said, "ele el," signed ELEPHANT, made the elephant's trumpeting sound, then signed "E-L-E-P." That's right! He tried to SPELL it!! On the test though, it looks as if he failed the task since only "ele el" was vocalized.

After two hours of testing, he then went to a sound booth for more testing. My attention span was struggling, so I am certain his was pretty much gone at this point. They chose this day to change up the way E identified sound. That's great that they want to move to the next level, but I'm not certain we got the most accurate info this way. Everything we had heard until this point had been so positive concerning E's progress. Suddenly, not so much. The cochlear team told us that they were concerned that his hearing aid was not contributing well and that his speech was not coming along as they would like. They said it was time to think about whether or not we were interested in a second implant. My husband and I both had the knee-jerk reaction of, "no." We decided we really wanted to see what his pediatric audiologist thought at his next appointment.

Last week, we had our one year follow up with our surgeon and with the pediatric audiologist. The audiologist confirmed that E's hearing aid was benefiting him. E was able to follow verbal directions while listening with only his hearing aid. She understood our concern and resistance to a second implant and said she wanted to see what the surgeon's opinion was. Well, we didn't get to see the surgeon. When it came time for our appointment, we were told we weren't on the schedule! Yup...this is the SECOND time his scheduling staff has done this (first time was his surgery date!). I'm just glad we had piggy backed appointments because it would have been terrible to take off work and drive all that way only to be told we could not be seen! We searched for our confirmation card at home, but found that we had already tossed it. I was really looking forward to scanning it in and emailing it. We have really had some awful luck with hospital administration throughout this journey.

We were able to see the language therapists written report after the language test. E made and 84 on the test. They wanted an 85 for "average" and this test is based on chronological age and not hearing age. So tell me, why did they act like he failed??! The therapists notes insulted my husband and myself as parents saying that we had not done our due diligence with E's therapy. It went on to insult our therapist by saying that she recommended an experienced speech and language therapist. WHAT?! He meets with a therapist every Thursday in our home and he has a second therapist that observes him and works with him at preschool. I was extremely angry and offended. I am still trying to determine my course of action, but I believe I will likely be asking to have this particular woman removed from E's case. She is obviously in opposition to our choice to be a total communication family and continue both verbal and signed communication, so I feel we need a therapist that is more open to our goals for E anyway. I am confused by the suggestion of a second implant and frustrated that we were cruising along so far with nothing but praise and then BAM! We are told things are not going as well as could be. My gut instinct tells me that it is time to push back.

Change of subject...

• We are now having a bit of success with #2 potty training! So far, he will only go for me, but it's a start!
• E's list of words that he now "reads" has continued to grow significantly.
• E has discovered honey buns and thinks they are the best thing ever. They have ZERO nutritional value for him, so it's no surprise to me that he loves them :-( The good thing is that I have been able to use them as a reward for #2 potty success. They are a very rare and special treat.
• Every night, I smell E's PJ pants if he wore them the night before to make sure there was no pull-up leaks. I can tell instantly if they are not good and clean and we need to toss them in the laundry. E has observed this one too many times I guess because he has started sniffing his clothes before putting them on!
• One of the most common phrases uttered in our house right now is, "STOP chasing the CAT!"