Due to a shortage of families found to participate in the interviews and my abundance of children we hosted two different student pairings. The first night the students came to discuss the two youngest kids. Malia of course was her charming self and the littlest man did his utmost to secure his share of the attention with his loud vocalizations.
Malia and the littlest man have very different needs but both are complex. One's needs are obvious while the other has challenges that are visible to outsiders but whose biggest challenge is invisible. Points I thought important for them to know were the hurdles and barriers in the community for kids with special needs and this includes relationships with the schools. Parents can be bombarded daily with voice messages and emails with staff wanting to have discussions about one issue or another and of course these are not always positive. Providing extracurricular activities both for enrichment and socialization require the same effort, organization and relationship building to set the stage for success that the school takes. There are challenges that affect families physically and financially. I showed the students how the littlest man's wheelchair works. Because his chair is a tilt in space it does not fold. What if your family vehicle is a small compact car? How do you transport child, chair and anyone else that normally rides at the same time? The pieces of equipment that kids with physical disabilities have are heavy and not all parents are capable of managing them. What happens when your non ambulatory child's size exceeds your own? What if you can't afford the adaptations to your vehicle and home? What if your child is sick a lot and misses a lot of school thereby making you miss work placing your employment in jeopardy? These are all stressors families with special needs kids face. These and a million more.
The second night I let Journey have a go at the next student pairing. Journey has a couple of syndromes that have offered her a lifetime of chronic pain and other issues that have lead to many interactions with a variety of medical professionals. Now that she is almost grown she is able to speak for herself in regards to what she would like to see in a physician and what her challenges have been outside of the doctor's office. The students were duly impressed as they should have been as my girl is pretty remarkable.
As the students were leaving I was able to talk more about my other kids and some of the things that would make for an interesting visit in the doctors office. Donovan is a good example. Though much of his speech is barely intelligible he can answer yes and no questions. He is also very clever at reading your body language to know which answer you expect from him. Yes does not always mean yes and no not always no. Now Donovan and others like him as adults would not likely be in an exam room alone so in that instance as is the case for the nonverbal patient the mother, the caregiver, whoever is in attendance is going to have to be trusted to be the interpreter.
The final piece of advice I offered was that they expose themselves to all different populations. It is hard for me to believe that in this day and age in a first world country that there are so many physicians who have had so little contact with adults with severe disabilities.
I hope we made a difference for these four students. It is my desire to have more opportunities to be a part of the educational process for up and coming doctors. I have complained long enough with little result so what is the saying "Be the change you want to see in the world"? This might not be completely appropriate for what I am talking about but the point remains if I want things to improve then I need to be an active participant.