Friday, January 30, 2015

Being part of the solution

As you might remember I have been having issues with doctors as of late.  With our primary doctor deciding to change his focus to sports medicine and with us not being, shall we say, sporty we have been left to find a new doc to take us on.  I have been to no less than six meet and greets as they call them and though for the most part the doctors were willing to take us on there were some that I didn't feel were up to the challenge.  Whether it be with their demeanour or the the fact they presented as though they graduated bottom half of their class I just didn't think they would be a good fit.  You might think I am awfully picky to have seen that many doctors and deem none of them suitable but that really isn't the case.  I promise.  All I want is for someone who I can tell knows more than me and has a bedside manner that would suit my most uncooperative kids.  Being that I'm not that bright it's not a hard bill to fill. Really.
After one of the infamous meet and greets where I had given one doc a second try with a different kid (trust your first impressions!) I called up my friend the paediatrician or rather texted in all caps "I NEED TO GET INTO THE UNIVERSITY!"  

The biggest problem I am having is finding physicians that were somewhat familiar or hinted at being comfortable around very tall nonverbal toddlers.  I say this with all respect for my kids.  The average functioning level around here is about two years.  I need a doctor that is going to treat the kids respectfully but meet them at their level.  I don't mean baby talk etc but approach them in that extra friendly way that you do when talking to children.  I figured since meeting six doctors and not finding this I or rather us as a family had to be part of the solution.  We needed to get to these doctors while they are still in school.

My friend. great as she is made some calls, sent some emails and whamo! I was talking with one of the profs teaching first year medical students.  They were looking for families of children with special needs to have students interview to learn about all the issues families are dealing with outside of the health conditions of their child.  They then would go back to the whole group with their findings, discuss and then after that I don't remember.  I was more than thrilled to bring these young assumably brilliant minds into the house and tell them everything that I could think of that would help families with kids with special needs in the future hoping against hope that they would still remember a sliver of what they heard and saw here.

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.

Fingers crossed

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