You Don't Look Autistic

This is a common statement I hear if I ever tell someone my diagnosis. I use a service dog for my autism and my severe migraines and I am currently training his successor.  So, people are always curious as to why someone who can walk, speak and seems perfectly "fine," uses a service dog.  Most people assume I am training them for someone else in more "need." While it is no ones business, it is a common question.

Service dogs are trained to mitigate multiple different disabilities.  Many are visible and many are invisible.  Having one or the other or even both does not make us any less disabled. Just because you can't see my autism, does not make me not disabled.  My neurological conditions do not have a "look."  Autism does not have a specific "look." It does not usually affect the individuals physical features like other conditions such as Down Syndrome, Williams or Waardenburg Syndrome.  Autism can have physical manifestations such as motor skill delays and balance issues.  I personally have balance and gastric issues connected to my autism.  But, even these are not "visible" to the untrained individual.

Autism is a part of everything I do.  It is a part of me.  I don't come with a side of autism and cannot turn it on and off at will.  Autism partially makes me who I am, but that doesn't mean I should be singled out or treated differently. And I honestly prefer to be treated as everyone else.  Is this too much to ask? Apparently, in the United States, it is quite a bit to ask for.  There are autism stigmas everywhere.  Even the new Sesame Street character Julia empowers the stereotypes and stigma about how autistics should act.  We are all individuals and cannot be stuffed into a tiny box of absolutes.  We should be treated as individuals and respected as such.

The stigmas hurt us more than they help us.  Every fellow autistic I know and have come into contact with wants to be an individual. They also have very strong voices of their own and they want to be heard.  Does this mean every autistic is like this? No, but the adult ones I have met are.

So, the moral of this post is basically to think before responding to someones diagnosis.  Saying something like "You don't look autistic" is rude and assuming.  Don't put us in a small box.  It isn't easy for many of us to open up to people.  Please don't make our lives harder with assumptions.  Let us spread our wings and be ourselves.

Continuous Pain

My favorite season is upon us and I am dealing with back to back migraines.  This apparently isn't unusual according to new studies that show, due to the lower humidity and weather changes, migraines increase.  I have a rather high pain threshold thanks to my multiple dental surgeries, IBS, migraines and period pains.  When I was in high school, I thought I was dying from all of the pain.

Migraines aren't just about pain, they are about so many other symptoms that occur.  For me, these include:

• Numbness
• Vision loss
• Hearing loss/muffled
• Balance loss
• Lack of use/paralyzation of certain limbs
• Sensitivity to hearing if not muffled
• Inability to speak and sometimes even make a sound
• Cognitive Difficulties
• Severe, striking pain

I used to suffer from acephalgic migraines or "silent migraines," which means I did not experience the headache or any sort of pain during the migraines. These were just as, if not more, severe as my migraines today. They consisted of all of the above symptoms except the pain. The silent migraines ceased around age 22-23.  Then I began to experience severe striking pain in my head.  This was definitely new to me.  It was originally believed that I could be epileptic when I experienced my first migraine around age 9-10.  After a slew of tests, it was diagnosed as aura/hemiplegic migraines.  

Why do I use a service dog for migraines on top of my autism? 

• Mac naturally alerts prior to the onset of a migraine
• I lose a good portion of my vision and need guidance from my sd
• I have Linc turn on and off lights when I am unable to
• Linc retrieves my emergency medication
• Mac & Linc both will perform deep pressure therapy to help lower my blood pressure
• Mac will retrieve help (training Linc currently)
• Linc will open and close doors if I am unable
• Linc can perform very light counterbalance when my balance is off

These are all very useful tasks I use during my migraines.  

Life Continues

As no one can make the world stop rotating, life continues and goes on.  So, on instagram, I posted the photo below of what Lincoln carries in his vest.  He currently carries a para cord tug, foldable water bowl from Bold Lead Designs, potty bags, an in depth ICE (in case of emergency) paper, an ID card with his name and more basic ICE info, ADA law card, a sumatriptan shot and some generic Maxalt pills.  Both the shot and pills are my emergency medication.  Amazingly, while it sounds like a lot, it isn't that much when you photograph it.

So, my new insurance is awesome and my sumatriptan shots (which I haven't gotten in 2 years because they were $70/each) are now $19/4 shots.  Quite an amazing thing.  Yes, they are generic, but does that really matter?  They work!

 My two dogs, Mac, my service dog for the past 6 years and Linc, my service dog in training, are my constant companions and a huge part of my support system.  They help me in ways no human is able to and perform tasks that no human would.  My dogs are my life and they are one of my main reasons for waking up every morning.  Lincoln is advancing in his training.  We restarted working on retrieves after a 2 month hiatus due to his teen phase.  Linc would retrieve an item, then throw it around to play.  He is finally moving through that obnoxious phase, so we can move on with his training. 

Another part of his training included going to a zoo for the first time. Lincoln and I went to the Madison Zoo for two hours today. There, the lioness wanted to kill him, the alpacas and Somali wild asses didn't know what to make of him and one of the giraffes followed us around in its pen. Then one of the polar bears wanted to pounce on Linc like a seal under the ice. The lioness scared him, but we left that enclosure and he calmed down. Went back over an hour later and he was fine. He never barked, whined or growled at any animals. He was most curious about the herd animals, but stayed in check. While his fear reaction to the lioness going at the glass was not ideal, he recovered and we will be working on that.

My main support system is my parents. My mom especially is my main supporter. She was the one who pushed me to find a psychologist and to finally get a diagnosis that made sense. She is also the one who would pick me up quite a lot when I was in school and was a huge support when I was in college. Both if my parents have been huge supports the past few years after I moved home to go back to school and deal with my conditions. 

Here is a glamor shot of Lincoln I took a few weeks ago after bathing, trimming, brushing and drying him.  He wasn't thrilled.

 And this is where I am about to head, to bed. 

My Migraines

My migraines are called hemiplegic migraines with aura because half of my body (usually the right side) goes numb and I have weakness.  My migraines can also last for about 4 days straight.  Individuals with aura migraines or hemiplegic migraines also have an increases chance of stroke.  My migraines began when I was 9/10 years old and have continued ever since.  My original migraines were considered (silent) due to the lack of pain, but the rest of the symptoms were there and they mimicked a mini stroke.  It wasn't under I was about 22 that I began having the striking, ice pick type pain during my migraines.  This just makes it worse. 

Episodes of prolonged aura (up to several days or weeks)

• Hemiplegia (paralysis on one side of the body)
• Fever
• Meningismus (symptoms of meningitis without the actual illness and accompanying inflammation)
• Impaired consciousness ranging from confusion to profound coma
• Headache, which may begin before the hemiplegia or be absent
• Ataxia (defective muscle coordination)
• The onset of the hemiplegia may be sudden and simulate a stroke.¹
• Phonophobia (increased sensitivity to sound) and/or photophobia (increased sensitivity to light)

ONLY AUTISTICS CAN SPEAK FOR AUTISTICS!!

Autism is a neurodevelopmental condition that effects various aspects of social, verbal, behavioral and mental behavior.  It is not a mental illness and cannot be "cured" with various drugs.  Autism effects how the brain works.  It is neurological.  You can study the condition out of a book or by being around autistics, but that does not mean you will fully understand the condition.  Neurotypicals (non autistics) should NEVER claim they speak for autistics.  We can speak for ourselves and are quire capable of doing so.  No neurotypical will ever understand what it is like to live in our brains, just like how we will never understand what it is like to live in a neurotypical brain.  We are unique and we accept that.  No specialist can tell you exactly how we are, because they have no idea.  They don't understand how our brains actually work.  No one but autistics can speak for autistics!!!  We think in images, our thoughts are very fast and can at times become jumbled.  Yes, we obsess over certain subjects, but that is because those subjects bring us comfort and a sense of familiarity.  If you couldn't tell, my main special interest is anaimals, specifically canines.

We stim at times, it's perfectly normal and helps calm us down, concentrate or even fall asleep.  I stimmed by rocking back and forth in bed every night until I went to college.  Trying to rock back and forth on a college loft didn't work and felt very strange, so I found other things to do to obtain the same comfort.  We are not screwed up, we are normal to other autistics and there is a silent sense of acceptance and camaraderie.

We don't need to vocalize everything, it can be annoying and waste energy.  Socializing with others can be very taxing on us and cause us to need alone time to recharge and be able to handle more social situations.  We don't tend to be fond of personal interactions.  This is why the computer and the Internet is so wonderful.  We can easily socialize without the massive energy drain and anxiety issues of being face to face.  I'm personally not fond of speaking on the phone or texting, never have been.  I would rather talk to someone in a messenger online than by using my iphone.

DON'T RANDOMLY TOUCH PEOPLE!  It's creepy!! This I will vocalize.  I am very sensitive to human touch.  I only allow it on MY TERMS.  Even with my family, it is based on me, not them wanting to be tactile and touchy, feely.  You shouldn't just randomly touch strangers!

Yeah, I may come off as strange, aloof and obsessed with dogs, canine nutrition, etc, but hey, that's just me.  Yeah, I will probably be sweating profusely if we meet and talk some, I have social anxiety issues and always have.  I highly prefer to dodge in person social interactions.  I'm not being rude, I just have issues handling them.  I have to recharge for about 2-3 hours for every hour I am "social" or around people or even in public.

Alright, thank you, my rant is over.  Good night random people reading this.

Oh and the sphenocath failed, my migraines are becoming more common and more severe.

Sphenocath

My mom and I headed up to Madison, Wisconsin for my ganglia block at the Madison surgery center.  My appointment was at 11 am.  We left Rockford around 8:30am.  Checked in and waited to be called.

 I went in, had my vitals taken, changed and had my iv placed.  I actually liked this one because they gave me a shot of lidocaine before inserting the iv needle.  This way I didn't pass out.  Then after that I was walked to the fluoroscopy suite.  The procedure literally took 7 minutes,  I was amazed.  Granted, the sedative didn't do anything as it was too small of an amount to affect me.  

I recovered for about 20 minutes and then was pushed in a wheelchair to the car and we left.  I slept on the way home and basically slept the rest of the day to recover. 

Bold Lead Designs Basic Harness

Lincoln's Bold Lead Designs Basic Harness arrived Monday and I fitted it to his body.  He has plenty of room to grow.  I will not be training any sort of mobility training until he is 18 months old.  He will be neutered next month and will have his hip and elbow prelims done at the same time.  

I have been slowly acclimating him to the harness.  An hour here, thirty minutes there, very slowly.  This was our first outing to go and get two more cichlids for my aquarium.  He did well and ignored the bld for the most part.

 Thursday night was this months kennel club meeting.  He did very well.  I sat next to our groomer and her poodle/irsh setter mix.  Natalie couldn't believe how calm Linc is in his training gear.

For now, Linc will continue acclimating to his new harness and then we will begin training guide tasks such as finding the exit to a room or building, finding and guiding me to my car and finally, finding and guiding me to help.

Taking One Thing at a Time

Before I talk about how Lincoln's training is going, I have some good news! My sphenocath/peripheral nerve block has been scheduled for March 11th! We will see if this helps my chronic migraines.  This winter has been horrible with all of the constant atmospheric pressure changes.  My asthma has also come back with the frigid temperatures.  I love winter, but I do not love my asthma returning.

Training a service dog takes time, energy, focus, money and dedication.  While Linc and I have been working on basically the same four commands, I have been adding in new challenges or using two of them together. Linc has retrieved a sock for me before, but I wanted to see if he would "tug" one off of my foot. He did it perfectly.

Next, I wanted to add in the "give" command and give me the sock after grabbing and tugging it off.  So, with this command, I have used three of the task commands we have been working on: "grab it" "tug" and "give."

Lincoln and I have also been working on various objects of various sizes and materials.

Here is a video of Linc retrieving four different objects, one right after the other. I am very proud of Linc for accomplishing this!

Lincs new training vest finally arrived.  I LOVE it! It is very visible in all types of weather and is reflective at night to car headlights.  I prefer to get vests in more of a "neon" color because they tend to be reflective on their own.

 The top of the vest.  As you can see, it says do not pet or talk to all over. =)

 Lincoln tucked under the booth while at lunch with my mom the other day.

 This sign should be on every grocery store, restaurant, etc place.  Pets are not acceptable in non pet stores.  I have had untrained fake dogs go after Mac and I can't have either of my dogs, whether my full sd or my sdit hurt.  It would be devastating!