Getting the Hang of Medical Appointments

This week it was time for the dreaded visit to the doctor so that V could be cleared for anesthesia. Next week she has a dental cleaning scheduled at Shady Grove Hospital, and any necessary scaling or restoration work that they find necessary. Last year, this medical appointment was a disaster because her new doctor and his staff did not understand how badly things can go when V has to wait in an office for a long time.

This year, I called the doctor's office before leaving our house for the appointment, to make sure that the doctor was running on schedule. Good thing that I called. He was not even in the office at 15 minutes prior to our appointment and still had 2 patients waiting ahead of us to see him. The nurse agreed to call me when he finished with the first patient, and we agreed that we would wait at home for that call, and only leave home after we heard from her. An hour later she called us, we left home, and when we arrived at the office the doctor was ready to see us immediately. V was reasonably cooperative during the exam and transitions in and out of the office. I had time to talk with the doctor about her health and to get a blood work order as part of an annual physical exam. This was a dramatic improvement over our experience last year.

We have started calling the psychiatrist office ahead of the appointment to determine if she is running on time as well, and then adjusting our arrival at the office accordingly to avoid the wait in the office or sitting in the car for a lengthy period of time. This is reducing the stress and anxiety related to these appointments for us all.

Yesterday, I spoke to the nurse at the hospital regarding the procedure that is scheduled for Monday morning. She was very understanding about the difficulty of waiting in a waiting room, and suggested that we arrive an hour before the procedure instead of the standard 2 hours. Then, I will go inside and register her while she waits in the car with my husband. When they are ready to take her back to a room, then we will bring her inside the hospital and avoid time sitting in the waiting area.

As the Beatles sing, "It's getting better all the time." So true.

Is There Justification for Denying Access?

When V was in school, I was surprised by some of the things that she was denied access to. I say to you, as advocates for your child, PUSH!

Push for an explanation that satisfies you, and then, when you get one, work to find a way that access can work. Ask the question, "What, other than my child, has to change to make access possible?" "What steps can we take to make this happen?"

At one point, I was told that V could not have access to a computer at school because she would break the equipment when she became agitated. Well, she had never broken any computer equipment, including the equipment that she had access to at home. The excuse was mere supposition. With supervision, which should not have been a problem since a 1:1 aide was part of her IEP, there really should have been little risk. Years later, when we wanted to put a computer in her room, and knew that she would have to be alone with it at times, we had a computer station designed that had a plexiglass door in front of the monitor, and locking keyboard drawer that solved the problem. I made the special education department of MCPS at the board of Ed aware of the design and the company that could duplicate it for them, so that they would not have to deny another special needs student access to technology. As far as I know, they have not taken advantage of the desk design, but have found the money to put electronic signs in front of all the local schools. Now, which expense would have had more impact on student learning?
It is your tax money that is being spent, and you have a right to have a say in how it is spent. Speak up!
I found out about the Dynavox voice output device years ago (1996 to be exact). I thought it could open up all kinds of possibilities for V in the realm of communication. Insurance would pay for it if a Speech and Language pathologist would write a report that indicated medical need. Someone who can't communicate if they are in pain, hot, cold, or tired is certainly at medical risk without a means to communicate with doctors and family. Instead of supporting the goal and working toward it, I was told that V was not ready for such a sophisticated device and therefore no recommendation would be written for the insurance. She was 12 or 13 then, and in the rest of her years of schooling, she was never any closer to ready for such a sophisticated device, and never receptive to speech services. Only since the end of school have we seen steady and significant progress toward those goals. Was it a lack of belief in her ability to make progress that kept school personnel from supporting access to technology and working to get her ready to benefit from it? Did they just not believe that she had enough potential to make the investment of money and time worthwhile? Was there a lack of creativity and motivation to think "outside the box" and look for a different delivery model of services that she would be receptive to?
In retrospect, even though I was always told that I was a strong advocate for V, "a poster parent" as one administrator called me, I wish I had not taken no for an answer, that I had pushed harder and perhaps V would have lost fewer years of progress.

Where does the negative thinking and dismissive attitude toward our children come from? Don't accept it.
* incidentally, our speech therapist works part time for MCPS, and she is awesome!