Luke’s Story – Finding Our School

Once Luke was officially diagnosed with a hearing loss, the audiologists at Mercy Hospital contacted Missouri First Steps to refer us. First Steps is a government program that provides therapy and equipment for children with delays or disabilities under the age of 3. It took several days for a service coordinator to be assigned and for her to contact us. I was chomping at the bit when I finally talked to Cassie, our First Steps Service Coordinator. Generally a child has to qualify for services from First Steps by having a 50% delay in an area of development. However, if they have a medical diagnosis for something that would impair their development, they automatically qualify. Luke had a ‘golden ticket’ for services and was automatically approved. She explained that usually First Steps would use their own therapists for services, but it’s a different ballgame for hearing loss. In the case of hearing loss, the parents choose one of the schools for the deaf in the area to receive services from. I had no idea how any of this worked or that there were options for care in our area.

I quickly learned that if you must have a hearing loss, St. Louis is the place to be. Compared to other states, Missouri is one of the most generous in terms of what they will provide. On top of that, St. Louis is the mecca for hearing loss resources. There are three schools in the St. Louis area that provide excellent care for children with hearing loss: The Moog Center for Deaf Education, Central Institute for the Deaf, and St. Joseph Institute for the Deaf. Cassie told us to visit the schools and determine where we would like Luke’s services to come from. So, a few days before Christmas, I started arranging tours with the schools. While we celebrated Christmas, and waited for the break to end, we started talking to people who have been through and going through this. The intake of information was overwhelming, I’ll admit. I was trying to research and learn about Luke’s hearing loss, while also figuring out how the process and schools worked. We clearly wanted to make the ‘best’ decision for Luke and our family, and the pressure to get it right was intense.

After Christmas, we went to visit The Moog Center for Deaf Education. We were armed with a copy of Luke’s hearing test and about four million questions. While waiting for our appointment, I started talking to a nice woman in the lobby. She told me that her son was born with a profound hearing loss and now has cochlear implants. They attended a summer camp at Moog the previous year and were so impressed that they relocated to the area for their son to attend preschool there. (We’ve actually talked to several families that relocated or drove several hours just for this school.) We met with Betsy Moog Brooks, the daughter of the school’s founder Jean Moog. Betsy must have known that we were overwhelmed, because she took the ball and rolled with it. I’ve also come to realize that she is also extremely proactive and a champion for the kids in her school. She’s the tiger that you’d want fighting for your child. Needless-to-say, Betsy made a huge impression on us. We were extremely impressed with her and her school. We discussed Luke and our concerns. We are worried that his loss is going to progress because he inherited the loss from Alex, but it doesn’t follow the same curve as Alex’s loss. And, we don’t know if Alex’s loss was always at that level because the earliest he was tested was when he was almost 4. Alex and I are also concerned about Luke’s ability to learn speech correctly and talk with little to no signs of a hearing loss. Betsy couldn’t agree more! She explained that even though Luke was on track now for speech development, that he would soon show signs of delays if nothing was done. She explained that for children, the more they hear the quicker and better they will talk. We spent about an hour talking to Betsy and asking questions. She wanted to set up an appointment for the following week for Luke to have a hearing test there so there wouldn’t be any delay while waiting on the First Steps process. The initial hearing assessment would happen before our First Steps IFSP, which meant that Moog wouldn’t be reimbursed for it. However, Betsy wanted to get started immediately. We set the appointment, and she told me to call and cancel if we opted to go with another school. We left the meeting feeling impressed! Moog was proactive, thorough, and organized. Plus, their reputation is that they teach kids with even a severe hearing loss to speak perfectly. The other schools were going to have to really shine in order to top Moog, in our minds.

Now, it’s not my intention to run the two other schools’ reputations through the mud. They are good schools, just not the right fit for us. One of the schools was in a bad location for us for getting Luke to appointments during the day. They also didn’t see as concerned about the possibility of his loss progressing and only wanted to check him every few months. They seemed more laid back, where I would have to push for services for Luke. I’m not an expert in this field, I don’t want to be the person who has to decide what Luke needs in these areas. It just seemed wrong. The other school did their best to impress us during the tour. However, we got the impression that they were just telling us what we wanted to hear. You have to remember, this is big business for these schools. The services from the schools are being paid for by Missouri First Steps – having us sign up means added revenue for them. A bit twisted, huh? Anyway, this school would say one thing and gauge our reaction. Then change their story and say another. It was obvious that they were interested in the revenue and not the child, and that wasn’t going to fly with us. Plus, we’ve also heard that they have plans of closing their doors soon.

Alex and I were walking to the car after the last school tour. I looked at him and told him that on the count of three, we should both say the school we think we should pick. He nodded. Almost to the car, I said ‘one, two, three …’ At the exact same time, we both excitedly said ‘MOOG!’. We giggled. What we thought was going to be an impossible decision, ended up being obvious. Moog was the clear choice for us.

moog

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