One Family’s Journey:
You Can (Almost) Always Get What You Need
Mick Jagger sang, “You can’t always get what you want/ But if you try sometimes well you just might find/ You get what you need.” This is precisely what our family discovered when our son Conor began attending our neighborhood school. Conor has always had the best audiologists, the best therapists, the best educators, and the best advisors training me. We feared he may not get the best there. However, we found that looks can be deceiving.
Conor’s professionals empowered me to become the advocate that I am today. It was impressed upon me from the beginning that my husband and I would forever be our son’s strongest advocates. We understood that we were the decision makers, thus the leaders of all who worked with our child. Therefore, we were educated on all of our son’s options. We were shown where our resources were. We were helped in evaluating our son’s schools. We had to clearly understand our son’s therapy. We knew what he was doing, why he was doing it, and what would happen without it. We were shown how school districts work, and what their responsibilities were, as well as our own. We were taught to listen first, ask questions, keep an open mind, know my child’s rights, and never back down. Advice and help was always just a phone call away. I gained the confidence to know that I could stand up for Conor when needed.
A very important thing that Conor’s early childhood team did for me was to help me understand how all of these different disciplines worked together. Conor’s professionals always collaborated with one another. From my son’s audiologist to his occupational therapist, each discipline shored up the work of the other. This cross linking created a strong cohesive team behind him. This wonderful structure showed me what I needed to look for in any future professionals, and how to facilitate collaboration.
The strength of this structure actually became a weakness for me —one placed phone call meant five people could be contacted immediately. Every meeting was preceded by a great deal of preparation and consultation. I rarely went into any situation alone, neither literally or figuratively. Even my initial dealings with a school district left little chance of anything going awry. The professionals there also became part of the team. Everything was always covered.
Would Catholic school work?
Conor’s entrance into first grade was where I learned the true value of not only the team I had, but also the knowledge I’d gained. This was also where I discovered my weakness. Up until Conor entered first grade all of his professionals knew deafness. I rarely had to explain my son’s needs. There were many times my professionals would say, “I knew you were thinking that.” The Catholic school Conor attended in first grade was great, but my son was their first experience with a child with a cochlear implant. At this school, he had a great teacher who was interested in learning everything, and really got to know my son. The school’s principal was accommodating, and very understanding of my son’s needs. Conor’s Title I teacher was just brilliant. The only problem was that, I had to take the lead with everything. At Conor’s oral deaf school in Kansas City, I never had to facilitate collaboration between his teacher and his speech therapist. My son had therapy every day, so his therapist usually caught problems before I did. In his Catholic school, I was the one taking questions, and finding answers. I was explaining a whole new world to my son’s school. Yes, this is what I had been preparing for. Yes, I could do this. Yes, it got done. No, I did not realize what a massive undertaking it would be. Thankfully my son’s education never suffered, but a great deal did fall through the cracks.
More to Life Than Driving to Therapy
My husband and I made the decision to put my son in public school for his second grade year. Conor has other therapies other than speech, and he was missing a lot of his education to make these appointments. In public school he could get all of his therapy, plus a deaf educator. Attending public school turned out to be the best decision we could have made.
Due to my procrastination, stemming from a bit of arrogance, I was unable to get Conor into the “perfect” school. The school with the sound field system, carpet on the floor, the great reputation, and that has educated children with cochlear implants. No. Conor would have to attend our neighborhood school. A school missing all the bells and whistles, and a school that had not had never had a child with a CI, which was also on the school improvement list. I just did not see how this was going to work. I had invested a lot of my time, my money (that I did not really have), my family’s money (that they really didn’t have), the near collapse of my marriage, and the majority of my sanity to get my son where he was, and I was not willing to let anything mess it up.
I did see two silver linings in this situation. The first was our district’s deaf educator. She and I had talked and emailed for years before ever meeting. She would check on Conor at the Catholic School, even though she did not have to. I knew I could trust her to get my baby educated. The other lucky break came in the form of a male teacher who came very highly recommended. A male teacher is such a rare commodity at the elementary level, I figured I could stick it out till the end of the year due to that factor alone.
I was honest from the start. I told them all that I would be a nightmare. I nitpicked every little thing. I complained about everything from the way the flag was raised in the morning, to the way my son’s teacher phrased his instructions. I was like an F5 on Christmas Eve, with no shelter to be found. Fortunately, all storms do come to an end, with the sun shining much brighter than before. After wreaking havoc for a month and a half, Conor’s team attended a workshop at Arkansas Children’s Hospital, where they met Conor’s longtime therapist, Michelle. I don’t know what they said or what they did, but she told me not to be so hard on them. She was impressed by their commitment, and how hard they were working for my son. I knew I needed to listen, because Michelle has extremely high standards.
I began to take a look at my attitude, and remember all I had been taught. I had been annoyed because Conor’s teacher hadn’t come to me with very many questions, until I realized he had professionals readily available to him. Conor’s school-based speech therapist was right there, and there was a school audiologist and the deaf educator to consult. Not only were the professionals almost immediately available, they also knew my son, and each other. This group was a strong cohesive team, and it was really time for me to get on board. When I finally decided to get know my son’s teacher I learned we had the exact same educational philosophy. We had the exact same goals for Conor, and the educational process. We were on the very same page about almost everything.
Eventually, it came to the point where I felt I had nothing to contribute. Everything was being handled exactly the way I wanted, and my son needed. I was not needed to run the team, therefore what was my role on the team? Then it struck me that since I was no longer needed as the Oracle of All Things Conor, I could now learn something. I had rarely revealed what I could not do, or what I did not know. I always just knew everything. If I did not express my weaknesses, how could anyone help me to work past them? This is where I learned teamwork is not just about what you can put into it, but what you can get out of it.
I began asking Conor’s team for help. When I revealed that I had things to learn, the team responded with strategies to make the process less taxing. My concerns about the standardized testing were met with two three ring binders of preparatory material months in advance. I was getting constant encouragement, and appreciation for my participation.
Conor’s most recent IEP meeting was a great experience. This was one of the rare occasions I got a chance to see the entire team at one time. I saw how they worked together. I noticed that no one seemed to be carrying the entire load. I saw how hard they worked to make sure that each discipline was supported. It was a great feeling to see that once again Conor was getting the best of the best.
For Conor, the benefits of his team have been extraordinary. The effort involved with learning has been greatly reduced. He is no longer as tired as he once was. Missing less school has helped him make friends. Conor now has time for after-school activities. I have time to focus on specific goals with him. Conor made straight A’s on his last report card, and he is reading above grade level. And I don’t know what type of mojo his art teacher has, but my son can draw now! Conor is really happy and comfortable. He is constantly telling me he loves his school. There is such a great sense of community, which is something I feared we would lose leaving the Catholic school. My son did end up in the perfect school.
Conor’s class now has a sound field system, and a smart board. Conor ended up with all the bells and whistles. I am so happy that not getting what I always wanted, got Conor exactly what he needed.
There are a few things I would like both parents and professionals to take away from our story. First we need to focus on growing the positives just as much as eliminating the negatives. Secondly, we need to step back, look around, and take in each step of the journey. Try to avoid the tunnel vision that comes from focusing so intently on the outcome. Thirdly, sometimes we need to let situations work themselves out. Stuff just happens. Let it go. If we spin our wheels over every minute issue, there will be nothing left if a real battle comes along. Finally, pat yourself on the back! You deserve it. ~