Strength shows, not only in the ability to persist, but in the ability to start over again. ~ Unknown
I know better than to let my guard down, to fall off my “A” game. When everything seems to be going smoothly, it is easy to take it all for granted, to just relax and breathe. But change is inevitable and while it is always important to take that much needed breather, as a parent of a child with a disability, I also need to stay alert and be prepared for changes in order to manage them as well as I can.
I’ve been thinking about this a lot lately as my son is undergoing an unexpected service provider change. If I took a poll of other parents, asking the following questions, I wonder what the results would be:
- Can you count how many times one of your child’s medical providers has changed?
- Can you count how many times one of his or her educational team members has changed?
- Can you say how many times you gave your child’s history as you started over with someone new?
I have lost count over the years. I do, however, clearly remember the first time, because it was devastating. It was my son’s first audiologist. We had established a bond right from the start. She was the one who informed me that my son was deaf. I had known something wasn’t right, so even though this wasn’t good news to me, it was welcome because it gave me something concrete to work with.
The audiologist helped me navigate the system to obtain hearing aids, suggested speech therapy, and allowed me to share my emotions. In my mind, she was an ally. When the news came that she was being moved to a different hospital and my son would have a new audiologist, I was distraught. The thought of starting over with a new person made me ill. The need to retell his story—which at that time was a living nightmare—and begin a new history log . . . . The hope that the new person would like both me and my son . . . . It all seemed so overwhelming.
I learned a lot from that experience. The first thing I learned was that I had time. Hunter was young and had a long road through the educational system ahead of him. I also learned how to quickly recap his history and tell our story (called an “elevator speech” because you can tell it in the time it takes to ride in an elevator). Finally, I learned that it was me who had a hard time with change, not my son.
Over the years, we have had more changes in medical and educational personnel than I can even begin to count. It has been a continuous revolving door. Each time I felt an initial shock, tried not to take it personally, and felt pleased with myself for having the documentation ready needed for yet another change in personnel. I knew that once the new person had an opportunity to work with my son and see how hard he worked, that a relationship between the two of them would naturally develop over time.
But now we are running out of time. In 13 months, my son will turn 21 and at this crucial point in his transition, we just learned that his current vocational rehabilitation (VR) counselor is leaving. After a secure, three-year relationship . . . another change. Not now, I thought, just when Hunter is gearing up to transfer to a four-year university. After recently visiting several colleges, he has many questions. There is paperwork to complete, evaluations to be approved, and assessments to be conducted. The timing is bad and the lack of time is worse.
Adding an extra layer of frustration to this situation, my son had not been informed that his VR counselor had been promoted to a new position. We heard about it through the grapevine. I suggested to him that he e-mail the counselor and let him know what he was hearing. He did, but received no reply. I became upset. We had all been working together on the goal of self-advocacy, and yet when Hunter was proactive on his own behalf, he was ignored. I stepped in and sent an e-mail with the same inquiry. My e-mail was answered, and I shook my head. This was not a good message to be sending to our transition-age students.
In his reply, the VR counselor included a supervisor and I helped redirect my son to begin again, with this new contact. As has happened so often, lately, I was reminded that I am passing the torch to him as he learns to be persistent and handle the many changes that will occur throughout his adult life. He will learn there is no guarantee that his supports will stay the same and that he will have an abundance of change in his educational, medical, and service personnel. He will need to be able to provide appropriate documentation and give his own “elevator speech.” He will always need to stay on his “A” game because transitions never cease. I hope he will also come to know that the challenge of starting over can be positive when you are able to come to terms with change and know how to take action.