The time I called a doctor out and did him a favor.

I've corrected people on more positive language toward people with disabilities.  I've kept my mouth shut on a few occasions so I wouldn't end up needing bail.  I've wished I said something when I didn't...aaaand I've wished I'd kept silent when I didn't.

Over all, I try to listen to people's hearts and respond in a manner equal to what I think they are going to hear.  Abusing someone will not change hearts or encourage friendships.

I know that doctors are most under scrutiny by parents of kids with disabilities.  Which, to some degree I agree with, as they have access to the most forward information of successes.  But in another, I feel like their very profession encourages grouping needs under headings.  When they see a child with a single disability, they see the flow chart that comes from that definition.  When you see a child, you should see the child first, and the disability only as an outflowing of how you will need to alter or at least understand any changes to your communication and relationship.  When you go to the doctor, you WANT them to see the impact and consequences of that defining diagnosis...

However, I've seen doctors that have been crucified for the off the cuff remark, "Most Downs kids"...They have been black balled by entire communities and warned off by EVERYONE.

Person First Language, simply asks that you use semantics to underscore a person's individual value without any diagnosis.  For example:  Elise is a girl.  Elise is a girl with Down syndrome.  Elise is not Downs.  She is not That Downs girl.  Do you see?  Do you feel the value and respect difference?

Summary:  Elise, as I have said, is having some originating problem that is damaging her.  She is completely exhausted...sleeping to excess and struggling to cope with life as a consequence.  My first address came at the pediatrician, to make sure I wasn't missing a virus or infection or allergy.  Second, I requested a blood draw, a CBC with differentials, and a thyroid panel...to rule out cancer relapse or her thyroid crashing because of puberty and hormones.  This week we went to the cardiologist to rule out heart damage from the chemo or some kind of damage/tearing due to her congenital heart defects that were repaired at 3.5 months.  So far, we have no answers.  Frankly, this is good, because other than a virus or thyroid, the responses would have been gargantuan and dangerous. I am still treating her asthma, and we have an appointment in a few weeks.

ANYWAY, at the cardiology appointment, we got a doctor doing his cardiology fellowship.  He looked about 15, with the long, foofy, Bieber hair, and freckles.  The words "darling baby boy" should not come to mind when you are at the specialist for your child's medical conundrum...yeah.  But he heard my concerns and discussed with me back and forth like I was a peer.  (This is lovely, not all cardiologists have this kind of respectful manner!)  Some of his advice was put on the back burner, but some was put into my current medical pot to stir about.  At one point, he stumbled onto the generalization, "Many Downs kids".  At the time, we had already established a positive back and forth.  He had already been respectful to me, to Elise and her history, and given genuine input to the questions we are dealing with.  I heard it as it was meant.  I heard his compassionate heart, his knowledgeability of our situation, and his insight into possibilities.

After I got home, I realized that keeping silent had done HIM a disservice.  He is in training for a specialty that will be involved with a high number of kids with disabilities.  By letting that slide, I was putting him up on the chopping block for his heart and knowledge not to be heard by not using person-first language.  So I called the office back, and asked how I should get into contact with him over a concern.  Through a long chain, I ended up sharing this information with what felt like half of the office...and eventually he, himself called me back.  And I got to share with him my regret at not saying anything.  That I was not calling for me or my child, but that I was appreciating HIS specialty and learning process, by sharing with him MY specialty.  And he responded like a champ.  He heard me, defended his ignorance with what he MEANT to say, and graciously accepted the criticism AND education.  I am confident that he will be more conscientious in the future, and I hope he will tell his fellowship peers and anyone who trains under him in the future.  I am also rather grateful that I was late in my response, as I inadvertently educated about 4-5 other people in that office as well.

Step outside of your world and your comfort zone with confidence in your own unique skill set, and you will witness the changes.

Time and Tolerance

It is funny how today's post and today's anniversary kind of run together in my mind.  I'll let you decide if they really fit the way they do in my head...

Today I realized that people's tolerance is directly proportional with the time they have.

If you have plenty of time, it is easy to show acceptance.  If you are running late, you are more likely to fall into patterns of intolerance.

Last year, I  let the girls sleep in as late as I possibly could and still get to school on time.  We made it most days, but it was really touch and go.  There was not time to whine about breakfast or shoes or how they didn't want to go.  I admit to being very short if any of these items were brought up. 

This year, due to Gabriel's new school, he has to get up much earlier, and the girls get restless and get up with him.  I got alarm clocks because of particular requests, and they have proven to have a positive effect on all the kids.  So, we have plenty of time to change our minds about clothes, shoes, and what they want for breakfast...and we are getting to school much earlier.

Last year, I was brought to the threshold of crazy thanks to the unwillingness of some of school staff to open the door for the girls to get out.  Previous to last year, I dropped Elise off on the other side of the school from carline.  Her teacher or para-pro greeted her and got her out of the car and into school.  Last year, they  cracked down on this practice and made her come into school with everyone else.  Except I cannot leave the car door without a child-lock because Elise has attempted to open the car doors while the car was MOVING. So, this means none of my children can open the car doors without them being opened from the outside.  I am not *allowed* to open my car door in carline, although I have before...so that leaves the bus duty staff to do so.  They often do this for littler kids, so I'm not asking for anything unique.  BUT if you are running bang on time, and you have no wiggle room, anyone taking longer than it takes kids to fall out of the door; gets hand waving; flipped off; car lights flashing; and on occasion, horns beeped.  I usually ended up having to pull all the way through the entire carline, stopping even 2 or 3 times in a pass in front of a staff member that stood there like a boob and made no move to open our doors.  I ended up making an orange handicapped hang tag with "Student Needs Help" written on it, and emailing the school that fact...so it would signal help was necessary for the student to get out of the door.  There were several staff members that would still never raise their hand to open our door.  I even went to the principal after them turning a blind eye to me WAVING THEM OVER gesturing at the window tag...and I may have threatened crazy behavior at that point (a demanding sign with naughty words on it)...and the principal admitted to having the temptation of letting me go through with said crazy behavior, just to watch said staff members squirm...  I don't know what she said to them, but the two staff members that were especially a problem started opening the door with saccharine greetings that made me want to shake them til their teeth rattled.

This year, Elise's para-pro is on duty and is calling to the staff at our station to open our doors.  The infamous hang tag hasn't made an appearance, nor do I anticipate the naughty sign being a temptation.  But, more interestingly, I am not getting the waving of hands; flashing lights; or angry, revving engines.  At all.  I believe this is due in part that if you are not late, you aren't as willing to throw everyone else under the bus to avoid your kids being marked tardy.

Today is the 50th Anniversary of Martin Luther King, Jr.'s "I Have a Dream" speech.  I have spoken on more than one occasion that the disabled population is this generation's oppressed minority.  In addition, I have read recently, that stress is #1 health problem in the US, that stress contributes heavily to heart disease, obesity, and  substance abuse issues.  I have no trouble believing this.  And this I further believe that it contributes to continuing race tension, oppression of people with disabilities, the divorce rate, and even more stress itself.

Maybe we don't need more time passing to fix relational issues.  Maybe we need to pare down our lives, take out un-needed commitments, and add time to allow freedom of movement during our day.  Maybe if we weren't tearing around at 100 miles an hour, we'd have time to stop other people's intolerances, to allow more time for those who need it to process input from life, and to build relationships and friendships with our dear ones and friendships with people unlike us.  Maybe we need to take time to love each other?