A for Autism and awesomeness aka Temple Grandin

So this is a continuation of my previous post :)


When I first was told that I might have autism I freaked out really badly. That was understandable since getting a diagnosis of a disability is hard for anyone. But I truly felt like my future was over and that I would never be successful or achieve anything because I like most other people thought of low-functioning autism when I heard the term.

This picture was taken by the Fort Collins Coloradoan when they covered the celebration where the Temple Grandin Scholarship was unveiled. I was actually at the celebration and ACTUALY GOT TO SHAKE DR. GRANDIN'S HAND!!!!!!!!!!!!!!!! :) :) :) erm... I digress...

That celebration reminded me of how Dr. Grandin changed the way I thought about autism - about my diagnosis of an autism spectrum disorder. I know I've said this a million times on this blog, but it was her story that turned my thinking around from, "AAAH! I'm on the autism spectrum, this means I'll NEVER SUCCEED AT LIFE and I'm somehow lesser." to "Hm... maybe I'll become a famous researcher now that I know I'm way way way more nerdy than the average person." It made me smile a little.

\More importantly, when I think of autism now, I don't think of a child in a corner locked in his or her own world. I think of Dr. Temple Grandin lecturing, or being licked all over her face by cattle, or teaching a class. I think of the way she's honest about her continued need to adapt to sensory issues and how she's continuing to learn about the social world. I think of how far she's come with the right help from teachers, her aunt, and her mother. When I think of autism, I think of her and I think of how I can help my clients engage with the world and adapt just like she has. 

The scary A-Word!

This article here states that infants with low birth weight are at more of an increased risk for autism. The lay-press article is based off of J.A. Pinto-Martin et. al. (2011) Prevalence of Autism Spectrum Disorder in Adolescents Born Weighing <2000 Grams. Pediatrics, 128(5), 882-892. 

It's interesting because I think a lot of people freak out when they read a risk-factor related to autism. It's like the dreaded developmental disorder diagnosis.  Because people often think of kids and adults with the disorder as mute and having severe behavioral issues. They might think about the bad things like uncontrollable temper tantrums that the caregiver can't contain unless he or she figures out the sensory issues or frustration issues behind them. They might think of the things like the child or client not being able to reciprocate affection.

As a caregiver in a group home, I can appreciate how hard it is to deal with the behavioral issues. I have thought many times, "Hm. I wonder what it would be like to get into Client A's head." I can imagine that it would be difficult for someone to raise a child or care for a client long term and have much of that client or child's inner workings of his or her brain be a mystery. I could also understand that the reciprocal affection is not always there. For example, when I say good bye to a certain client, he will sometimes give me a wave, but other times he is off in his own world and will give me a slight glance as I wave to him to leave. On the rare occasion, his wave is paired with a smile. That makes me feel warm inside.

Even if I wasn't on the autism spectrum, I would hope I would have a better outlook when I hear the word autism. I think of when I watched Wizard of Oz with another client for whom tornados and witches are some of his special interests. The big grin he got on his face when I said, "Look, S! It's the tornado! IT'S GETTING THE WITCH!" and he laughed is an image that comes to mind when I hear autism. And the interested look and small smile another client gave me once when I turned on a string of decorative lights in the living room is another good image. Even if I never experienced autism myself, seeing people on the spectrum  enjoying their environments as well as when they struggle in their environment might give me a more balanced picture of autism. If I become an occupational therapist, I hope I can pass that along to others as well.

Feeling Behind no matter What

So today I had a moment of feeling behind in life. I just checked Facebook and found out one of my friends I knew from my time in an internship got married. She's younger than me and she adds to the ranks of other people younger than me getting a ring on it. 
I also hung out with my cousin today who's a teacher and is married with two daughters. Her daughters were really cute. My cousin is 2 years older than me. After we hung out, I went to the CSU campus to work on my Occupationaeltl Therapy school application. 

Suddenly I felt behind. 


Suddenly I felt like I wasn't where I should be in life. I should have a good career going OR I should be married and producing grandchildren for my mom. 

Even though my job at the group home is fulfilling, most people don't see it as a long-term career goal. And I obviously am not married. 


Yet as I entered my coursework into the application, I realized: I accomplished something: A CRAP-LOAD OF SCHOOL!!!!!! But seriously, not everyone gets a chance to go to a university or go to grad school. So those things are accomplishments. And not everyone has the personality needed to work in a group home. 


I thought about it further: What if I had a career? What if I was a program manager instead of a direct support provider at my group home? I could still feel behind if our organization wasn't running our facility like another in the region. I could still feel behind if I didn't have a ring on it. 


OK. Well, what if I had a ring on it and had a kid or so? If I stayed home, I'd feel behind because I wasn't working in the 'real world' even though providing direct care for a child's physical needs and teaching them social skills and helping them accomplish developmentally appropriate tasks is hard hard work. I get a glimpse of it when I work with kids in a classroom and when I see parents out in the field. 


Let's take it 1 step further: Let's say that I had a good career and was a wife and mother. First of all, I'd go insane. Secondly, I could STILL FEEL BEHIND!!!!!!!!!!!!!!!!!!!!!!!!!!! No kidding. I could be like, "This person with the same family structure is moving faster in her career. This person with the same hours as me somehow scheduled in more activities for her kids than my kids have..."


Suddenly a lightbulb came on in my head: We all want to be ahead - to win the big prize of accomplishment.

. 

I think it's just human nature and part of wanting to be a god of sorts.  Yet if I realize that God has a plan for our lives and if we are in Christ, God has our approval because we have Christ's righteousness that He gave to us on the Cross. So we don't have to work for some sort of tangible or intangible trophy. We fall in to the temptation ALL THE TIME. We just have to apply faith and do good in the stuff God calls us to do and tell people about Him. And the cool thing is God helps us with that. 

Then I don't have to bemoan, "Oh, I'm not married. Oh, I don't have an AMAZING career, oh, I'm going back to school while everyone else's lives are moving on.... oh woe is me. :P" I can thank God for where He has taken me, where I am now, and where He would want me in the future :) Then I don't feel behind anymore. I feel right where God wants me :)

Seeing another's path and finding my own

I'm taking a class called Handicapped Individuals in Society  (OT 355) as part of preparing to apply to CSU's Occupational Therapy  program. Sometimes it makes me remember or think about how I've dealt with my disabilities in the past and how I'm doing now. 


According to the reading I read yesterday, people who are in the bargaining mindset (from Kubler-Ross's grief process model) see a glimmer of hope and seek out how their disability can be fixed. 


I realized that was partially to account for my fixation on Dr. Temple Grandin. Soon after my diagnosis of PPD-NOS, I was searching for a future. I was wondering, "Now what?" Conveniently enough, someone had lived life with an autism spectrum disorder and she was just a bus-ride to campus away. 

I became fixated on her life because I needed a path to walk down. My whole sense of who I was and my future was rearranged, and I needed somewhere to go. 


I thought, "If my life could look like hers, I will be ok." "If I do what she does, then I think all this will be worth it." That was why it was the bargaining phase of my thinking. That clamoring to find something to not necessarily fix, but finding something good to balance out the really intense bad feelings of, "Oh my goodness, someone threw a sledgehammer at my development / identity / future plans!!!!!!!!!"

Well,  EXACTLY A YEAR AGO, I actually got to see Dr. Grandin at a lecture!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Yes, she gave that exact lecture, though this picture wasn't taken at Colorado State University. It was pulled from Google Images. Anyhoo... I saw her at the University Center for the Arts at Griffin Concert Hall with one of my best friends Kristina.... IT WAS REALLY AWESOME AND I TOTALLY EEKED AFTERWARD!!!!!!!!!!!!! 

Erm - sorry, I got distracted :) So after the lecture, I realized that I can't follow exactly in her footsteps a) because livestock is not my thing (I'd so get trampled, and cows and horses smell funny) and b) more importantly, our ASD affects us in different ways. Dr. Grandin is totally cool with giving a lecture in front of millions of people since that's apparently what she spends half her life doing. She's less comfortable just hanging out talking with people even though she does it during book signings. I don't know how much she'd like working at the group home where I work. I like it :) 

So I realized this: Our paths initially cross wherein we both are on the autism spectrum, and we are both affiliated with CSU, but we're very different. Part of moving into an acceptance frame of mind was when I realized that I could look at her path to see how God used one person's disability and then trust Him for how He would use mine. One way where Dr. Grandin and I are the same, is that I've had the opportunity to help my clients on the spectrum and empathize with them because I've felt similar frustrations as they have.  Where my path will go, I don't know. It might cross Dr. Grandin's path again, or it may go a completely different way, and that's fine :) 

When the feeling is (neurochemically) stripped away

Something I didn't mention on the vacation summary was that I did all that on 2x my normal dose of antidepressants that I take in very low doses for anxiety that comes with having an autism spectrum disorder. I decided ahead of time to up my dose (which my doctor said it was ok to do in times of stress) because I knew I'd be a formal caregiver for my mom, and to a lesser extent, my grandma and my aunt. It was hard being "lead staff" at the airport at DIA. I felt sensory overload coming on, and if I had aggressive tendencies, I probably would've thrown something. I was grateful that I was potentially 'overcompensating' by having more calming neurotransmitters in my brain for crisis situations that did actually come up. 

I went back to my normal dose after vacation, but I still felt emotionally 'blah.' it's like someone still hadn't turned back on half of my emotional connections that were somewhat suppressed on vacation. The basic emotions like happiness, sadness, fear, and anger I could still feel, but I didn't have access to more complicated or in depth emotions. 

  

This affected my relationship with God, along with not really being able to completely focus on reading the Bible and/or praying over vacation. I didn't feel motivated to pray or long for a connection with God. 

Yet I knew logically that connecting with God is good. God calls us to remain connected like a branch to the rest of the vine (John 15:5), and as I am one of His creation, and one of His redeemed, it's nice for me to check in :) I knew God's Word is spiritual nutrition, and depriving myself of that is like not physically feeding myself. 

During the time when I was going back to my normal dose and letting my brain 'reset' itself, I still felt like I was in an emotional dry spell. People would tell me things and I could logically empathize with them and feel sad or happy when they told me something, but I couldn't quite completely feel the complicated emotions they were feeling. I realized this during a meeting with some other people from Symbio. It felt good to tell people that I was in an emotional dry spell and needed my Creator's help to  connect to Him even if only the intellectual channel was open and also it would be nice if He helped my brain :D 

Well, good news, I think my brain has finally reset itself!!!!!!!!!!! I feel excited about a friend's bridal shower, and a greater depth of joy as I read the Bible and listened to some worship music. One thing that I think helped me connect to God was just to listen to truth (getting a Chris Tomlin CD from the library helped :D ) and just soak my brain in it. I just pondered it and reminded myself that it was logically consistent. Chris Tomlin's And if Our God is For Us CD has a lot of great theology packed into its songs! 

When many of my more complicated and deep emotions appeared neurochemically stripped away,  my belief in God was retained. My connection with God was retained of course through His Spirit and also because I have learned too much about God to just deny Him. I know He holds all things together and is the strength of the believer. I know He rebuilds and redeems and nothing can stop the rebuilding process for a people or for an individual (look at the books of Nehemiah and Ezra). I know He is sovereign, and He works all things for the good of those who love Him. He is Savior because Christ ressurected from the dead defeating death and sin. I felt happy being reminded of these truths and being reminded that they are logical and conceptually tied together in a lot of ways. Now that more emotion circuits are turned back on, I can feel a deeper joy and my love can grow more and more in knowledge and depth of insight (Philippians 1:9). I am glad that my growth is ultimately up to God and not dependent on my own emotions and neurochemistry!!!!!

So how was the vacation anyway?

So, yeah, I mobile blogged sort of in a bad mood haha!!!!! But really, I enjoyed my vacation. I went to a family reunion. The relatives were pretty neat to get to know. I'm not posting any pictures of them because I don't know how they would feel about their photos being in the blogsphere....


One of the first things we did was visit the Genesee Village and Museum. It was a working 1850's village. I nerded out asking about teacher training back in the day when Mom and I visited the school. This time was the first time I really felt like I was on vacation. That was nice :) I took a 'break' from walking around with Mom and walked around with some great aunts and cousins. It was fun to talk with them as we walked around.

The next place I visited was Niagara Falls. That was fun.Ok - it started out with me being more like a crisis-intervention staff for my mom because she was mad at her sister for not letting her out of the car sooner when she was trying to find a place to park. Mom had to go to the bathroom and we narrowly made it into a cafe. Mom was still pretty miffed and I dealt with that. 

But seeing the falls reminded me that God was bigger than all that. I'm pretty sure that Niagara Falls was formed after the Flood. At first I thought it was ironic that people were flocking to a place that was created out of the Flood which was an act of God's judgement. But seeing beauty in it reminded me that God was gracious too. Being reminded of who God is helped me relax and enjoy myself again :)

Yup. That's me. Mom and I went on the Maid of the Mist tour and I got a little wet. But it was so refreshing - it was like the stress of getting to the vacation and Mom's crisis just was washed away. I realized that when God says He's washing our sins away, it's not like standing under a regular garden hose, or even a nice shower. It's like standing under Niagara Falls. He washed my stress away and I enjoyed getting wet haha! Funny thing, the water was salty. After getting wet, I bought a cute stuffed duck that was wearing a little rain-jacket like the one I had on. She's cute. I named her Misty the Duck.

The next thing we did was go not the whole 15 miles, but about 3 miles down the Erie Canal on a boat tour. They had a live musician that was rocking an acoustic guitar. He was about Mom's age, so he knew a lot of the songs she liked. My favorite part of that trip was sitting next to my great-aunt Doris and singing along to some of the songs with her. That was fun because singing is just a neat way to bond with people. I also had a 'dance party' with my distant cousin Taysie. It felt sorta weird to be busting a move in front of everyone with her, but I realized I probably would've done it with one of my Summitview friends. When it was just time to relax and I didn't have any caregiving duties, I reminded myself just to be me. Sometimes it's hard being me when other people need me, but dancing around with Taysie was fun :) Also we got to go through the locks on the canal and that was pretty awesome!

Other than sight-seeing awesomeness, we just hung out as a family and talked. Sometimes it got tiring doing all that socializing, but it was nice sharing my life with everyone. They seemed to enjoy talking to my mom and I because they laughed in a good way a lot. Mom and I slept a lot on the plane back as did my aunt Flora. Flora got a kick out of watching the guys put the luggage on the plane while loading it onto a giant conveyor belt. She was laughing and saying, "Wow!" and I told her, "See, that's how they get all our bags on the plane! That is so cool!" 

Now that I'm back, I can say that the vacation both had it's rough spots but also had its fun moments. I'm glad I went and I will keep in touch with some of my new-found relatives! :) 

Family member clients

It's my second day on vacation.  Yesterday we went to Genesee Country Village and Museum.  That was pretty cool :)

Today I'm still trying to negotiate the balance between being a family member and being a 'staff.' Whenever my aunt or mom gets agitated,  I seem to slip into a "staff" role. This is good because I can use my training,  but bad because I tend to become more emotionally distant.  I think you have to be distant to use logic,  but perhaps when everyone is calm, I can engage emotionally and feel more.