Tag Archives: autism

Oh, Atlanta 2011

 I am in Atlanta for the holiday week.  It isn’t * that* long of a car trip, but 6 hours in the backseat of a small Honda sedan doesn’t due my titanium-enforced spine any favors.  Suffice it to say, I am sore & * very* grateful for accomidations that include my own sleeping room with wireless Internet. My little canine ” “neice, Chloe, wanted me to take her on a stroll around their neighborhood when we got home from supper but it is pouring a cold rain now.  So that leaves me happily listeningto Death Cab for Cutie’s new album for free on Spotify .

Mom, Dad & I are staying at my brother & sister-in-law’s house near Midtown, Atlanta. We just returned from a tasty authentic Mexican supper in a trendy little place located in Midtown. I ate the cheese quesidilla & it was excellent.  Best Dude is back in Northwest Florida taking care of my pets & I miss him.  My family is playing cards downstairs in the dining nook.

Since I do not play cards, I declined joining in the card games downstairs & am enjoying some peace & quiet tunes on Spotify.

I am reading a really great book { nonfiction} called_Brains that Work A Little Bit Differently_ Its about how aneurotypical people are easier to understand if neurotypical folks just take the time to see us as individuals with specific challenges AND specific gifts. It’s a fascinating read, especially for someone with autism & an amazing{ albeit scary as heck} photographic memory.  If I see it, such as a route to an unfamiliar place, I will NOT forget how to get there again. I also remember faces, but not names, even though I do not look most people in the eye.  My family knows my quirks, but I know they wish I were more like them. ;O/. Although they love & accept me, I’m the ” oddball* & always have been in my overly gregarious family. But I take comfort in knowing that some cultures value the thoughtful intellectual who prefers books & dogs to many people.

Books & music….this is a nice evening for a holiday vacation.I love country music, but I am in sort of indie-punk mood this evening. Modest Mouse, Death Cab for Cutie &  Katy Perry are some of tonight’s lineup.  I’ve yet to figure out how to move songs to individual playlists.

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Moses stuttered. I can’t drive a car.

It’s that time of year again….soon I must present my spiritual autobiography to my EfM seminar group. Thankfully I still have two more weeks to polish this years’ version of my spiritual autobiography, but its gonna be very different from the past two years’ autobiographies.

I’ve grown a lot since last summer & a lot of growth occurred because Best Dude is also the senior warden at our small parish. I am for sure not the most patient person ever born, so this year has been a year of me attaining some decorum. :O)

That being said, I am still rather unwilling to follow my vocation. I’m probably making up excuses, but I am just not quite sure why God wants me to do what God seems to be asking me to do. My main concerns are my physical limitations. While there is NOTHING wrong ith my intellect, I am mildly autistic & also have a spine supported permanently by two titanium rodes *and* a neurological problem that alters my eyesight so much that I possess almost no depth perception. I’ve overcome many of these challenges , but right now God hasn’t opened a metaphorical ” door” for me to fully overcome my physical conditions that keep me from safely operating an automobile. Part of my spiritual growth that I’ve prayerfully worked on over these past five years is coming to peaceful terms with the fact that I will never operate any sort of motorized vehicle.

It has been in the past two years that God has opened up opportunities for me to serve the Church in a wider way in spite of my challenges. After all, Moses stuttered & he led God’s people out of slavery in Egypt.

What people with Autism might want you to know…

Of course, this is my version of the list that an Autism Mom who is a good friend of mine challenged we adults on the spectrum to produce. People with Autism might have brains that work differently than those of ” neurotypical” people, but our brains work just fine, thank you!

~ Assume intelligence. Many people with Autism are blessed with higher-than-average intelligence. Just because most of us don’t look at people’s faces when you talk with us or maybe appear to ignore our surroundings does NOT mean we lack intelligence. Actually many of the people whom I’ve met with Autism are unusually intelligent. A lack of social and/or communication skills doe not mean one lacks brainpower.

~Our sensory issues are real. Certain noises,tactile sensations, lighting quality, tastes do affect us more strongly than neurotypicals.We are not being ” difficult” when we insist that a certain texture, noise, ect hurts us. It does! For instance, the texture of spinach *REALLY* bothers me & I’ve yet to convince my own mom that this is a legitimate sensory issue. She thinks that I “just don’t like spinach”. Also, the high-pitched whirling noise of most vacuum sweepers hurts my ears. On the job at a daycare years ago I’ve encountered employers who merely think I am trying to get out of sweeping duty.

~Don’t assume that people with Autism will never be involved in romantic relationships. We desire companionship as much as neurotypicals.

These are the ” Big Three” of what I wat the world to know about people with Autism, based on my own experience.

me & my autism part ten million

The first part of my day was really lousy. I had my twice-annual dentist’s appointment & cleaning today. I have MAJOR sensory issues & the dentist chair is one of the worst places for someone on” the spectrum”. All my senses were overwhelmed, but especially my sense of smell. I’ve discovered that the smell of latex really sets me off.

Thankfully, the woman who cleans my teeth knows of my autism & switched to a non-latex pair of gloves–halfway through the cleaning. But, she did make a note on my chart to use the non-latex gloves in the future! She is so patient with me & I am such a bad client.

I sure as anything would NOT want to deal with me if I were in any medical profession but dental visits especially overwhelm me. As with most people on the autism spectrum, when I am overwhelmed I tend to want to have what in generally called a ” meltdown”. No, I don’t scream , kick or otherwise act out physically, but I do become very grouchy, ” squirmy”, & downright unpleasant. what folks need to understand about autism is that the sensory issue s are very real to those of us with autism. What might only slightly annoy a neurotypical person{ such as the smell of latex} can be physically torturous for those of us on the autism spectrum.

No offense to anyone in the dental profession , but I am the world’s worst dental patient. Smells , noise & tactile sensations can bother me & the combination of all the above in close proximity to my head .

Please understand, we don’t mean to be rude or seem demanding towards health-care professionals. But our brains * are* different from those of most people & this can cause a lot of confusion & misunderstandings . I feel badly for anyone who has me as a patient!

50 Days with KJS : Day 1

 {1 Corinthians 12:12;26}

I’ve had a lousy couple of days, so I started my  5o-day reading of _ A Wing & A Prayer today.  Bishop Katharine has a w ay of offering comfort through  her written meditations & I think she is one of God’s greatest Gifts to the Church Universal. 

 Day One is ” One Body, Many Members”

This is especially poignant to me, as I’ve had some rather difficult few days. Anyone who knows me at all knows that I have a highly functioning form of autism. Although my intelligence is above average & I am fairly self-aware{ but not as self-aware as normal people I struggle  with social cues &  suffer  from sensor overstimulation issues.  Although my biological, nonbiological & parish family are aware of my  challenges. I know I  can be * very* difficult to deal with sometimes.  My Irish-Russian American family has the Hawaiian notion of  OHANA to a science. They never let me down & are always there for me.  We’re family & family never leaves members alone.

But I am blessed with  parents & a brother{ and sister-in-law} who should be candidates for sainthood. Seriously, I’ve gotten as far in my life  mainly because I was forced out of my comfort zone.  When my autism causes some frustrating behavior, those I trust & love call me out on the inappropriate actions.

 So, what does all this  share with ++Katharine’s  message on  the many members of the one Body of Christ.  Plenty. The Church SHOULD be open not only to  folks like myself whose differences are mostly frustrating for other people but that same love  needs to be offered to people who are even more different from ” the norm” than me.  If we all are members of the Body, with Christ as its Head, then all parts are equally valuable.   Christ calls on all Christians to practice  OHANA.

++ Katharine asks us to consider folks with whom we would rather not find ourselves linked. Frankly, I  don’t want to be linked with R.D. but through our Baptisms & even though the tradition of the  Anglo-Catholic tradition he & I are linked.  I LOVE  being liked to leaders such as ++ Katharine: She & I agree on much. But  folks such as R.D & Christians who follow his way of thinking…um not so much.   

In our life in community as Christians, each of us is interconnected to the other.  Personally, I would much rather not be  connected with the  former bishop of Pittsburgh, ROBERT Duncan, as I hate schisms & totally disagree with that man’s reason for causing that schism in the diocese in the part of the country. But R. D. *is* my brother-in-Christ.  R.D. & I woulldn’t have many nice things to say to one another if we met but  Christ calls  Christians to love everyone the way Christ loves each of us{ see, I do pay attention to the homily on Sunday!}  I find it hard to love R.D. & I am pretty sure he would find it hard to love me…as a matter of fact since I am such a big fam of ++ Katharine I know he’d find it  almost impossible to love me! But R.D & I are two very different parts of Christ’s Body.

++ Katharine asks us to consider folks with whom we would rather not find ourselves linked. Frankly, I  don’t want to be linked with R.D. but through our Baptisms & even though the tradition of the  Anglo-Catholic tradition he & I are linked.  I LOVE  being liked to leaders such as ++ Katharine: She & I agree on much. But  folks such as R.D & Christians who follow his way of thinking…um not so much.

On days such as today I need to keep reminding myself that  am just as valuable to God as are my brothers & sisters in the faith who  are not stuck  with the burden of  being medically unable to drive.  Having a pity party never helps, so after I let some tears flow & read my lesson from ++ Katharine I am coping. Today I Also remind myself that all Christians are  part of the Body.

Amen.

Autism Movie review

I almost never watch movies more than once.  But I will make an exception  for the HBO movie about the life of Ms Temple Grandin. On Saturday I plan to view this film again with some friends.

My mom & I watched the film together when it premiered & it was thought-provoking yet tear-jerking at the same time. Many parts of Temple’s coming-of-age I can totally relate to: I didn’t & still do not understand  people & prefer the company of dogs { and books!}

Temple’s Mom has a great quote in the movie. She says” Different is not less than. ”

Amen & amen again!

I am a person with autism & my mind works differently from  those of most people. This is the way God made me & even if I had a chance I would not wish to be any other way. 

As was Temple, I  am & was blessed with a wonderful support system while growing up & even now. My family is exceptional, especially my parents, brother , sister-in-law & the extended family on Dad’s side.  I am also blessed with the most amazing set of ” second parents” ever who  can take the credit for my being able to converse with ” strangers” at all{ I hate talking with people whom I don’t know, but I * can* thanks to the relentless efforts of Bill & Marsha}

Here in Florida, my parish community is my primary means of support outside my immediate family.  But on second thought, I can claim & credit the whole Episcopalian  faith community here in the United states: coming ” home” to a Christian community where God wanted me all along has been & will continue to be a huge part in my growing as a person.

If you can, watch the movie about Temple Grandin & be inspired.

My Mission Here & Now

Mission can & often does occur in foreign lands, but more often than not it is needed the most in our own communities.

I am a person with Autism. And God made me this way for a reason.  I am what doctors call” high-functioning”, meaning that I am above average intelligence. But there are other areas in my life which are cause for struggle. But I am who God created me. If I wished to be anything different then that would be negating  who I am as God created me. That would be wrong. God delights in all God’s creation. Some people might not understand, & therefore fear, those who are different, but we are God’s Children too.

There is a GREAT song  called _ I’m In Here_ written from the perspective of a child with Autism. While I clearly did not write those words, I could have written them when I was young. People with autism are , first & foremost PEOPLE. 

 My mission is to educate the public about people such as myself & to advocate for the rights of all persons with disabilities…but especially those of us on the Autism Spectrum. I love working in my ” mission field” , even though what I spend a lot of time & effort doing is not ” churchly”, it is  social justice .  It is very important to feed the physically hungry, but there is a whole mission field open in the world of advocacy.  I’m directly affected by Autism but there are so many other social-justice ” missionary” work that needs the help of we people of faith.

 We speak a lot of doing mission work overseas & that is all well & good. But ” mission”  needs to be synonymous with ” action”.  God calls us to use our Gifts to make the world a better place, to  further the Kingdom Of God on Earth…or that grand vision of ” shalom”.

My ” mission” is with families who love someone with Autism. I volunteer with two organizations which  support families & people who are affected by Autism & I love every minute of it!   For now & in this place, Autism  awareness & education is my mission field.

 As an adult on the higher end of the Autism spectrum, I’ve discovered that I am a God-given resource for both parents & professionals who work with and/or love someone with Autism. I talk{ sometimes too much!!!} & pray that my voice might be a voice on behalf of the voiceless.