Life with AS & SPD from a woman's perspective

Ma & Me 2013

Ma & Me 2013, Christmas Eve.

We’ve heard it said time and again, especially at this time of year: “Change is inevitable.” This is an infallible truth. However, what I do not hear much about is adjustment. We on the spectrum are not immune, but generally do not adapt as easily or well as our non-autistic peers.

I am a case in point. Very suddenly, my mom developed a chronic lung illness in 2004. She began to cough up blood and I had to be strong for her, calling 911, navigating the rapid mental processing of answering questions quickly while under extreme stress. She recovered to a degree with medication, but was re-admitted over the years. By 2011, it was apparent that she just would not be the strong person I knew and loved for 30 years.

Progressively, she was not able to garden, walk for long periods of time or go out to our quiet “haunts” (safe places where we could have fun). She went on oxygen and attended a bridal shower, where she caught a virus from someone. Bigger change yet was to follow. She lost a dangerous amount of weight. Hospitalizations. Loss of mobility. Most recently, loss of persona.

My mom has been my all (since 1994 after my dad passed). She has been mother, advocate and friend.

To say I’ve been slammed with one change after another since my dad’s sudden death 20 years ago is truly an understatement. Most non-spectrum people would probably (I am assuming here) look back and wonder how they made it through. As my mom once said, “We should write a book, but nobody would believe what we wrote.”

Dealing with her declining health is emotionally exhausting. Dealing with being “on call” from 2pm-11pm is an additional stressor. She can now be quite demanding and childlike (a normal result given the fact her brain is not processing as it did even 4 months ago.

Emotional roller-coasters are another factor. 4 ½ months ago, though weak, her mind was still strong. She drove me to my therapist. She required a lot of assistance getting out of the car and into the building, but she did it. I was so happy for her. Then she took another nosedive around Christmas-time.

Instead of hoping for driving, I will take just having her make it across the room without gasping and having to hold on to the furniture or another person.

I now personally understand what it is like to see a relatively healthy person suddenly regress beyond a reasonable and acceptable point. I know what it is like to fight as much as I can to find answers. I know it is not up to me, ultimately.

I will be an orphan one day, someday soon. An adult left to navigate life on her own.  “Dealing” with people, versus relating to them as they may be educated but apathetic to autism-related behaviors. You can pay for a companion, but you can’t pay someone to love you. Love can’t be bought. Love must be earned.

I am blessed to have one aunt who contains traces of my mother, plus her own bubbly, outgoing personality. Another woman (who is my honorary aunt) lives far from me, but the phone does work.

I must remember that this illness is affecting my whole family. I try in little ways to let them know I care (little notes, e-mails and pithy compliments).  I wish I could say that from family, first responders and society in general that the love was returned. I can’t.

The Bible says that a person is hated by the world for following Christ. Ain’t it the truth.  The world did not recognize the Light. It tried to put Him out. The good news is that it has not succeeded and never will. I just hope I can follow his example until my time comes. Isn’t that the best any of us can hope for?

Some quotes:

“Owner of a lonely heart, much better than an owner of a broken heart.”-Yes

“Look for the silver lining and find the sunny side of life.”-Chet Baker

“In God have I put my trust and confident reliance; I will not be afraid. What can man do to me? Psalm 56:11.

He can beat me, attack me, chastise me, persecute me and bully me, but I’m still going to heaven when I die!

2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 5,300 times in 2013. If it were a NYC subway train, it would take about 4 trips to carry that many people.

Click here to see the complete report. Thank you all who visited my blog. My mission in writing it is to help adults with ASD cope based on personal experiences. I pray that something you read has helped you or a loved one better cope with life. I give thanks to The Creator for allowing me to prosper. I hope you do, too.

There is power in numbers. If you would like me to be a guest on your blog (purpose in sharing information only), please leave a comment & Word Press will contact me. A blessed 2014 to you.

Allison with bear_edited in Photoshop.

Allison with bear_edited in Photoshop.

This little light of mine, it's going to shine!

This little light of mine, it’s going to shine!

Merry Christmas to all who serve!

Merry Christmas to all Americans who serve.

The Many Moods of Christmastime

Red Squirrel posing for photographer

Red Squirrel posing for photographer

Agreeing to DisagreePhoto: Microsoft

Having Asperger Syndrome, I tend (by nature rather than spite) to be legalistic. I do not choose this route; I am simply being mind-blind. I think others will naturally like all the same things I like or believe as I do.

I can become defensive toward someone if they express that they “hate” something I love. I react this way, because I see it as a personal attack. Usually this is not the case at all. Someone simply has a different taste in music, movies or holds a belief contrary to mine because they are different than me. My getting defensive and refusing to accept their beliefs is a fast track to losing a relationship.

(*)Legalism (noun): Strict, literal or excessive conformity to law or moral code.

An example of legalism would be me sounding off on someone who was vehemently opposed to gay marriage. Yelling and sending sarcastic comments to them just makes for another relationship ended (a good friend, not a new acquaintance! See my blog on what not to say in new relationships).

Legalism thinks, “I am right and only I can be right!” Legalism says, “You are lesser than I for thinking/believing differently than me.”

I am very sorry to say that I have encountered a fair deal of legalism when communicating with some people on the autism spectrum. I have had to confront my own legalistic thinking that tries to tell me that all people who tell me off are horrible people. Part of this is having Asperger’s; the other is a result of being severely bullied during my middle and high-school years. I have had to learn through therapy, family support and faith that there is such a color as gray (and it comes in more than fifty shades!) I thought that seemed a bit daunting at first. Black is one color and white another. 2 is a good number, easy to keep track of, right? It turns out that in real life this is not the case for reasons already stated.

(**)Sarcasm (noun): a cutting or contemptuous remark.

A neighbor to legalism is sarcasm. Let me explain. Legalism hurts because it makes snap judgments. Often times, when a sharp or cutting remark is made on top of the judgment, it is like pouring salt into a fresh wound. Legalism and sarcasm are catalysts.

Sarcasm thinks, “As if you could possibly be right!” Sarcasm says, “As if you really have any worth or value as a human being!”

Life is too short not to enjoy it and do so with other people. Doing that requires “gray” thinking. Don’t be daunted by this metaphorical phrase. Simply put it into use by being open toward others; their views, beliefs, likes & dislikes.

Here is an aside: if someone you meet and get to know turns out to be a member of a hate group or tells you their favorite pastime is pornography, this is a time to make use of your other friend, common sense. If you know a person engaged in such activities, I advise telling them calmly that interest in activities that demean or look down on others is wrong and you cannot support that. They might not change; each sober-minded person is accountable for themselves. If you are of a faith, you can pray for the person, but then you need to let go and move on (did I mention there are an estimated 7 billion people on the earth? That is a lot of people!

We on the autism spectrum as a growing minority must take the high road. Don’t try and beat your hurt feelings by joining in with the person who hurt you. You may wish to pray for them (though your feelings at the moment tell you otherwise). You might wish to simply say “That wasn’t very nice.” If they defend themselves using legalistic thinking and sarcastic words, let them have at it-but don’t reply. A fire without fuel dies sooner or later. On social media such as Google+, which I use, you may have to block a few people. Never tolerate harassment and bullying from anyone. For each person I have to block, several decent people take their place. Summed up, life goes on. I hope you choose to spend it with positive people who in turn cannot do anything less that inspire and encourage you.

Let us be open to people of other beliefs, opinions and ideas. It will not only inspire, but define us as stable, humble, gray people!

* Merriam Webster Dictionary

** Merriam Webster Dictionary

Follow

Get every new post delivered to your Inbox.

Join 122 other followers

%d bloggers like this: