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.
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| 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.
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| 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.
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| 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.
