Saturday, 14 May 2016

Month of Turmoil

Autism Acceptance Month is over.  With all of its (be) awareness, it is a hard month for many autistics.  This year there were more acceptance pieces, though.  Some of them were the old awareness fear mongering type, masquerading with a new ‘acceptance’ title.  It is difficult to see those.  There were some changes as well, so it wasn’t as bad as some previous years.   

Aside from that, there has been some turmoil in our lives the past couple of weeks.  We were sent an email that our riding instructor, who had taken over from our last riding coach, would be leaving the barn and the owners would be taking over the lessons.  It was a change, but in some ways it was better because the one person taught similarly to our old coach.  That meant that Micah would actually have better instruction.  I wrote back saying that this would be fine.  The email reply that I received said that they would not be keeping Micah and I on (I haven’t ridden since November anyway) and that they would be retiring the horse that Micah rode.  We were devastated.  We have been there for 6 years and Micah volunteered for two summers.  I have been told by someone else that they are supposedly getting rid of all private lessons but keeping groups.  If this is true, why was a group not offered to us instead of kicking us out?  I did email to ask about a group but there was no reply.  
Photo: Female presenting teen with grey horse
I personally think they wanted us gone for various reasons, although we paid on time and followed the rules.  I would be surprised if there are not private lessons still going on, but I could be wrong.  It is hard to find a new barn because I am more aware of the safety issues and different abilities of coaches/instructors.  So far, we have a Groupon for Micah to try lessons where our old, good coach is now teaching, but it is out in Pickering, (45 minutes away).  We went to check it out and it looks nice, but it is a long drive and hard on my body and its EDS issues.  I know for most people coming from the city, this is a normal drive but we live in horse country and we are used to 10-20 minute drives to a barn.  There is also the awareness that this coach has not stayed in other jobs, outside of where she originally taught us, for very long.  The lesson time is also not ideal, so Micah will have to miss some lessons or miss other things.  It has been a time of great anxiety for us.  Especially, for Micah who is very worried about what will happen to the horse they rode.  Most of the barns that I have contacted in our area are not suitable.  The next one I plan to contact does have two level 2 coaches but it is huge, so we will see.
Photo: Female presenting teen with grey horse and show ribbons
I think there could have been a better way for the old barn to let us go.  They knew about our autism, anxiety issues, and Micah’s PTSD.   Maybe longer notice (obviously not possible for the instructor leaving) and keeping Micah on in a group lesson until I was able to find a new barn would have helped.  I don’t know what could have been done differently but something should have, especially with the emails.  You don’t say you’re are taking something over and then not do it.  Micah is having a very tough time with it.  Change is hard for autistic people like us at the best of times.

May is Ehlers Danlos Syndrome awareness month and Micah was able to get their diagnosis at the end of April.  It only took them a month from referral to get in, while the usual wait is now over 12 months.  For those of you who are unaware, there seems to be a large part of the autistic population who are diagnosed (or should be) with EDS.  EDS is supposed to be rare but it is mainly just undiagnosed.  We were expecting Micah to be diagnosed, so it wasn’t a surprise.   They have hypermobility type and not the hypermobility/classical overlap that I have.  It is a painful lifelong condition and they already have more subluxations, dislocations, and pain than I did at their age.
Photo showing the Beighton Score, facts about EDS, and how parts of the body are affected
I am interested to see if there will start to be more research into the EDS/autism overlap.  Why is there such a high percentage of co-morbidity?  The co-morbidity of autism and anxiety/depression makes sense- but EDS?

Time to get back to the barn search!  At least we have the one in Pickering, even if it is only temporary.  
Video of Micah performing with their music school jam band, M.E.L.T.  They are playing the song Riptide.  Micah sits to play bass to adapt their playing style due to the affect of the EDS on their fingers.  Video lyrics are on my Youtube channel (Mandy Klein) where this video is located.