Saturday, 25 October 2014

New Medication

I mentioned in my last blog post that I am trying a new medication.  I am mainly taking it for anxiety but it can also be used for my pain.
Due to my new found occasional confidence, I was able to ask my psychiatrist about trying it.
I had asked my social worker, through email, if any of the people he sees take it.  He said yes and that they do find it helps them.  He also said they usually get it prescribed by their pain doctors. 
I am fortunate because my psychiatrist has been open to trying different medications, so it seemed like he might be open to me asking about this one.
I currently take three medications for my anxiety: Welbutrin, BusPar, and Valium.  The first two I take every day and the Valium I take as needed, which is sometimes every day for a while, it can also be twice a day at times, and then there are days where I don’t need it.  My anxiety is constantly there, medicated or not.  I have been on many different medications and nothing gets rid of the anxiety.  These three have been the best mix to date, but they are far from perfect.  Welbutrin of course has the worst side effect which is weight gain.  The other two seem to be not too bad, except for dry mouth with the Valium but that could also just be my anxiety!
I have generalized anxiety disorder, social anxiety disorder, probable OCD, and anxiety related to my autism.  Anxiety is not part of autism, but it is quite often co-morbid.  In my case, it is due to my communication skills, issues with past interactions, sensory problems, generally not knowing what to do, and people just not understanding autism and therefore my needs.
Anyway, I talked to the psychiatrist about a few things that morning (pretty good for me!) and then I brought up the new medication that I wanted to try, one that I had been wondering about for quite a while.  That medication is something some people would never have expected me to ask for and I wouldn’t have except I know there are alternative ways of taking it and that it does seem to help many people.  

Enough of the suspense yet?!

Okay, I will tell you.  I asked him to prescribe me medical marijuana.  He finished writing my other prescriptions and then got up and got some papers.  He was actually doing it!  What I got was a referral to a compassion club (I didn’t know that and thought it was one of the clinics).  He filled out his part of the forms and then told me to fax them after adding my details.  I asked if he had other patients on it and was told yes.  I asked if it worked and if they were able to get off of their other medications.  Yes, it worked and some did get completely off of their medications while others decreased them.
Medical cannabis is legal but most doctors are nervous about prescribing it and so won’t.  They are also unsure of dosing etc.  There are clinics opening up who have doctors there to specifically prescribe and instruct on usage.
I wouldn’t take it illegally and I also don’t want to smoke or vapourize it.  I don’t want it in my lungs.  I have asthma and my mother died of lung cancer. 
With my paperwork faxed in, I figured I would get a prescription from them and could then order on-line from one of the suppliers on the Health Canada website.  Not quite.
I was contacted with an appointment date and time for an orientation.  I was also given multiple special instructions.  After thinking for a few days, I questioned them on the secretiveness of it and was told that the difference is that they are a dispensary and not a grower like the ones on the website.  Okay.
My friend said she would drive me because I am not comfortable driving in downtown Toronto.
I was very nervous because I could not take a support person in with me unless they are already a member.
I made myself go.  It was an experience!  I was asked to fill out paperwork, got a membership card, and verbally instructed on how the place worked.  I explained that I am autistic, so I asked the girl to walk me through everything.  I ended up buying some capsules that contained cannabis mixed with coconut oil to try. They are very low dose and I was told to take them on an empty stomach three times a day.  I also bought a few nighttime ones (stronger dose) without thinking (a good time where I could have used a support person).   I don’t need them for sleeping so I will probably try to split the dose in half and use it that way instead during the day. 
I took my first capsule when someone else was home because I wasn’t sure how I would react to it.  They take 1.5-2 hours to take effect and I was told to take another one if there isn’t any difference in 3-4 hours. 
I have noticed a difference.  It seems to gradually work.  My racing mind has slowed and I am more relaxed even if something bad happens.  They actually work!  I think I could do with a slightly higher dose or a different blend, especially since it didn’t do anything for my pain.  I have had no side effects.  It does not make me ‘high’, just more at peace.
During my trip to the gas station, car wash, and music lesson, I was calmer.  I didn’t have to use my fidget much during music.  We had to switch gas stations because the car wash was closed at the first one.  Not a big problem.  Normally that would be a disaster for me but I was okay just to get in the car and go somewhere else.  That is a pretty big thing for me.
Making dinner isn’t as stressful.  I usually have to make two or three slightly different meals and have them ready at the same time.  Normally, I get totally stressed out running around in circles and the nights I have had the medication, I flapped once where normally it would happen more or I would have minor SIB.  I also wasn’t all over the place physically and mentally.
I am glad the new medication works and when I get a steady supply, I want to try cutting down on my other ones.
I emailed my psychiatrist and asked him to refer me to one of the cannabis clinics in the city so I can get the prescription to do mail order. They should also know what sort of blend and maybe dose that will work best for me.  He has agreed to do that so I should hear soon. The compassion club will do mail order also but you have to have a prescription for them to do it.
The most recent exciting thing my new medication was able to help me do was drive to the Wretches and Jabberers presentation in Toronto and finally find the parking lot (not easy) at the university (click university for one of the confusing maps.  That was just the buildings not the parking!) without melting down.  Good thing because we were taking someone else with us!  I was also able to take that person up front to talk to one of people (Estee Klar of The Autism Acceptance Project) who helped bring the presentation up to Canada.  That is something I would never do, let alone actually speak to someone I have only typed with on Facebook!  I can’t even look at or speak to people I have seen many times.  Sometimes it takes me up to a few years before I can do that.
I would have to say that I will be continuing the medical cannabis and hopefully will completely get the anxiety and pain under control.  I will be able to get more when I go to Mount Sinai for my Ehlers Danlos Assessment in a week.

It says this is a calm face.  I will have to believe it because I don't know facial expressions!

Friday, 24 October 2014

Wretches and Jabberers

Saw Wretches and Jabberers tonight and stayed for the Q&A after. It was great! For some reason, I have always felt like I have more in common with those who type to communicate and need more support, than I do with those formerly diagnosed as aspergers. Of course I don't know if I had a speech delay so who knows. I just know I don't seem to fit anywhere. It was interesting to see that the guys have a lot of the same hand movements and head hitting that I do (but I have always hidden most of it). It's nice to feel like I fit somewhere. I also got to meet one of the advocates whom I look up to! That was exciting! I'm glad I took my new medication (blog post coming soon) before I went so I was brave enough to take someone up front to get information on how to be involved.
On the other hand I heard that one of the speakers at the Geneva Symposium has decided that she is no longer autistic. Coping and faking being allistic is not being cured of autism. There is no cure. This will be a set back for those of us trying to protect autistic people from 'cures' like MMS and hyperbaric oxygen chambers. Another good reason I had no interest in going to the Symposium!

Saturday, 18 October 2014


So, I mentioned in one of my blogs that I received some funding from Autism Ontario's Building Brighter Futures Fund.  A fund provided by an anonymous donor for autistic adults.  I had to submit an application saying what I would use the money for and how it would benefit me.  It is a one time fund of $500.  Not a large sum but perfect for what I wanted to use it for.

I have been stressing the past few years over the fact that I could not pump gas at the computerized pumps or use a car wash.  My husband used to do it for me but he is too busy so I drive across town to the one full serve place.  Doing that is a big waste of time.  My anxiety got even worse when I got my new car at the end of December.  The only time my old car was washed was when my husband had time to take it.  I think it went once in the last two years I had it.  That can't happen with a brand new car which needs to last many years.

When the funding came along, I applied for it to be used for a support person to teach me to pump gas and go through car washes at various stations and I also wrote that I might also use it for music lessons.

I was accepted for the funding and then I had to find a support person.  I wasn't sure where to find the right person.  I knew a good place where I could get music lessons though!

My husband and daughter were having their music lessons one Saturday at our house, so I impulsively (as usual!) asked their music teacher, who is also our friend, if she was interested in the job.  She said yes, so that took care of support and music all with one person!  She runs the music school that my daughter and husband attend.

Even though she knew me from coming to our house socially, I thought it would be good for my friend/support person to speak to my autism consultant.  In doing this, she was instructed in the way I learn best- slowly and with lots of practice.  I wasn't sure how things would work out considering she is not specially trained in autism and I didn't know what to expect with any of the teaching and going places.  I was kind of worried she would rush through it and I wouldn't understand.

It has been great, although for a bit I was in a rough period (I will talk about my new medication in another blog) which had nothing to do with what we were working on.  I am gaining some confidence, especially from the singing lessons!
I have gone to several different gas stations and car washes and have even gone to the hazardous waste depot which is very confusing with all of the different areas for different appliances and phones and things like that and then a special area for things like paint, pills etc.

I think the singing has been the biggest thing to help my confidence.  I had a horrible experience in school.  We had to sing in front of the whole class for our exams.  Mine of course didn't work out so I was told to come back individually.  I went back and still couldn't do it properly.  Way too much anxiety!
After that, I wasn't sure how my current lessons would go especially since my anxiety is even worse and different now.  I was able to do it though, quietly and not allowing my teacher to look at me!  I had my fidget toy and lyrics also.  Singing along with someone or the actual artist on YouTube is easy enough but now we have started using just music.  It's really hard but I am getting better at it.  We only started that recently.

Another thing I have done with my support person is going to my OT appointment.  It was entertaining as usual and we got lots of video.  I allow the OT to use it for her presentations.  Because I hold myself very stiffly (I don't even swing my arms when I walk), I get pain in my lower back sometimes when I ride. The OT said it would be good to work on hip movement but because I don't have the body awareness and motor planning, I really struggled at isolating my hips.  I have many different exercises to work on.  It's really hard to do it and also to fit it into the day but I am trying.

Since I have started all of this, I am able to speak up a bit more for myself in certain places.

I had to go somewhere very scary for me last week to get my new medication and my friend drove me down.  I was able to tell the person at the dispensary that I am autistic and needed to be shown exactly what to do.  It was good that I was able to go and do that on my own (they didn't allow support people in).

If you are autistic and in Ontario, I highly recommend applying for the Building Brighter Futures Fund.  It's not like there is much else out there for us.

Health Canada Notice About MMS

Health Canada has finally put out a warning about MMS.  Giving bleach to autistic people is dangerous.  There is no cure and most of us don't want a cure anyway.  Here is the link to the MedEffect notice.  This can seriously harm people.  There are parents who bathe their kids in it, give them enemas, and make them drink it.

Sunday, 5 October 2014

Autism 'Awareness' Month Canada (October)

It's Autism Awareness Month in Canada.  It's such a big thing (sarcasm) here that I forgot!  There is very little, to no mention of it in the news and on Facebook.
At this point we need more than awareness anyway.  We need acceptance.

The definition of awareness is having knowledge of something.

Yes, it is important but most people are 'aware' of autism.  They know it exists, but they don't truly know what it is. The way autism awareness campaigns are generally run, they portray autism as a tragedy.  It is a way to raise money for the organization running the campaign, especially that big well known organization AS (they focus on the April awareness campaign it seems though).  Awareness involves talking about what is 'wrong' with us, our deficits, making us normal.  It is pointing out and getting rid of our differences, blending in with the crowd.  It makes it seem like it is not okay to be autistic.  It treats autism like a disease to be gotten rid of.  Awareness campaigns seem to focus on one part of the spectrum, making the public think every autistic is like that- a child who can't speak, constantly has meltdowns.....  It makes for good fundraising, usually for research (to 'cure' or prevent us).  That money can be put to much better use getting us the supports we need to have the best life each autistic is capable of living.  Awareness that autism exists is just a starting point.

What we really need is acceptance.  The definition of acceptance, in this instance, is favourable reception; approval; favour.

Acceptance is saying, it's okay to be autistic.  It's okay to be you.  It's not trying to separate autism out of the person.  It is impossible anyway.  It is part of our brain's wiring, it affects every part of us- our communication style, socialization style, sensory system, everything.  Taking away our autism is taking away a big part of us.  We would be completely different people.  Could you imagine changing your child or friend into someone you no longer know? 

Acceptance is knowing that autism is a disability in some areas and an advantage in other areas while supporting us in both if we need it.  It is saying, 'it's okay to be autistic'.  It is saying, 'how can we help you, what areas do you need support with?'.  Including us in everything to do with us.

Acceptance is autistics not feeling we have to be embarrassed by or have to try to stifle our stims and interests (some are very original!).  It is allistic (not autistic) people knowing and understanding that stimming may be one of our forms of emotional expression.  Some autistics flap, jump, squeal, or all three when they are happy.  An allistic person on the other hand, may smile and some may even cry when they are really happy (which to me makes no sense, but there is nothing wrong with crying when happy.  It is just the make up of some people!).  I flap when I am really anxious or frustrated.  Sometimes, I will flap, jump and squeal if especially frustrated.  For me, I don't flap when happy.  I don't get happy anyway!  I just am.  Maybe the emotions thing can be another blog.

Acceptance would mean me not having to be afraid to use AAC (augmentative and alternative communication) in talking to someone or a group.  It's people not thinking I'm faking or trying to pull something by using AAC, because I can talk most of the time.  It would mean that if I were to sing on stage at a recital (I'm taking lessons) that I could rock side to side while I do it or have a fidget and nobody would think that I'm "weird" or that it isn't proper- the way a performance should be.  It helps me and if it helps me and does no harm to anyone, should it really matter?

Acceptance is the world knowing that autistics have valuable contributions to make to society the same as any other human.  It is letting us speak for ourselves, however that needs to happen- verbally, signed, typed etc.

Accepting us means giving us the same rights and respect that you would to a non-autistic person.  It is knowing and seeing that we are different but just as capable.  We are all individuals after all.

We are not projects for someone to work on, we can be friends, and an autistic friend can be a truly loyal friend, who can keep your secrets.

Acceptance is observing an autistic person shopping while wearing ear plugs/muffs and sun glasses but thinking nothing of it.  Just seeing a fellow shopper.

Acceptance doesn't mean we don't have really rough days or need treatment for various issues.  It means meeting us where we are and supporting us through it.  Just being there for us even if it is just in the background to assist us if needed or just helping us wait it out and then not seeing us any differently when the bad time is over.  We have bad times like everyone else but ours may be a little messier!  Acceptance is loving us no matter what for our whole person, just as you would love your non-autistic loved one.

I don't generally feel accepted in most places I go.  I try to hide most of my true self.  I want to feel that I can openly stim and not just in socially appropriate ways (chewing my pen, twirling my hair).  I want to be able to flap when I am upset in public or anywhere that I am.  I want to be me and not have to hide.  Very gradually that is happening but I'm not sure that I will ever be able to openly act the way I do when I am alone.  I have had to hide for so long that I don't do most of my stims, except for verbal ones, in front of my immediate family even.

I have someone who has been supporting me and is also my friend.  I have been able to tell her things and they don't scare her off.  She seems to accept me as I am.  I haven't done much stimming in front of her yet but I'm sure she would take that in stride too.

It is time for Autism Acceptance to be what everyone is striving for!  We could do so much more with support than with people constantly trying to change our neurology.