Saturday, April 27, 2013

Sweet Saturday

Had a signing workshop this morning and learned the entire song "He Knows My Name" in sign language! Beautiful!! We began learning "Amazing Grace" but time ran out. Learned that when signing songs, it's not always about exact words, but about meanings of words. And when performing in a group, everyone must agree on the signs used! Now a point of consideration: "Twas grace that taught my heart to fear, and grace my fears relieved, how precious did that grace appear the hour I first believed." Grace appeared. Did grace change you or did grace arrive?

I was asked about why I am learning sign language (or rather refreshing my skills). Autism. Because sign language can help me communicate when verbal skills challenge me.

Friday, April 26, 2013

Fantastic Friday

I have not quite developed my self talk yet. Many thanks to my friend Tom for his patience at my thought throwing! Especially as I work through the process of learning how to express my emotions in words without lashing out from not knowing words to help communicate. It's so interesting how one can verbally communicate yet not communicate at all. But as a result, even with about 80 percent anxiety, which hopefully will lessen next time I talk with my friend, it truly is a fantastic Friday overall. One problem: I like alliteration (Mr. Popper's Penguins film). It is strangely soothing. But how to come up with sayings for each day of the week?

Thursday, April 25, 2013

Thursday Thought

Crying in the presence of another is not a sign of weakness. It is a sign that the person(s) in the presence of whom one is crying is trustworthy enough for the honest bearing of the soul. Guard the hearts of those brave enough to cry in your presence for they trust you enough to not hold back.

Conversely, laughing in the presence of another either means something funny was said or done or that you are truly crazy in the head. Whichever the case may be, never be afraid to laugh at the sweat minor mistakes in laugh for the ability to laugh at one's own mistakes (like flooding a bathroom because you weren't paying close attention to how full the sink was getting) is a mark of great maturity and wisdom. Or so I hope because if it's not then I have been sorely misled by some very wise folks in my life. Guess though for me this means that unless I find someone to teach me to dance within the next week, I better be ready for laughs when I have my first not tap dance! Oops!

Behind the picture: 1. I had a mouthful of a new food. 2. My friend's reassuring words that I don't need to worry that we're not going to still be friends just because we can't always talk (though most of the anxiety is due to his upcoming trip and so coordinating our schedules will be most helpful). 3. I don't think I was supposed to combine those three ingredients together in my drink. ZIP!! But energy went up which was desired outcome.

Wednesday, April 24, 2013

No Words Needed

No words needed for this!

Thank God for Fruits and Vegetables

They make beautiful flowers reminding me of God's beauty. And they make inexpensive food! Oh, and thank God for ABA and friends like Tom and Janet who push me a little more each day! I'm facing some new challenges head on now! First job application, first like/crush, first time trying bell pepper raw (with help from some meat), first dance?, lots of firsts! More to come!

Monday, April 22, 2013

Late Night Thoughts

1. I'm sorry to my friend Tom for experiencing my first real fit of jealousy last week. It's not the jealousy itself that was the problem. It's what I did because of it.

2. Life lesson: As bad we might have it, and some of us have bad, there's always someone who has it worse than we do. For example: As lacking as the U.S. is in coverage for adults with autism (and access to therapy and services and equipment grants and iPad grants and church ministries to/for/with them which often leads to exclusion which actually is an offense against the least of these and thus against Jesus), as lacking as the U.S. is, a film, Not Forgotten done by some Birmingham and other Alabama folks showed me that as lacking as we are in continued coverage and support (1 in 88 children will grow into many adults (statistics may be higher factoring adults)), we are not as bad off as others. In the Ukraine, they have even less support. There is one home. Otherwise, much like in the U.S., the children may or not go to school and many parents may stay with them hardly going anywhere for fear of what their child or adult with autism may do if they were not accompanied. Some of these children have no fathers present because the fathers took off. The mothers often quit their jobs to care for their loved one. The other choice? Institutions. Government run institutions that may treat the person as an animal. Saw the film Friday. If you get to go to a screening, please do. Was saddened to hear that as of the last few weeks that one child was turned over to an institution and a second was going to be handed over to one. These children had potential. Now they will have a "meaningless existence." Why? Because professionals and parents don't understand autism. They haven't been educated. Which brings me to something else.

3. Education. April is Autism Awareness Month. April 2 was/is World Autism Awareness Day. Okay. So now you have awareness. But you know what? Don't stop there. Education is more crucial. You see, when you go beyond awareness and educate yourself, then you truly begin to accept. And like any other human being, we, I, want to be accepted. Many of us don't tell others about our autism for as long as possible because of the misconceptions and stigmas. I spent most of last year hearing two thirds of a group that was supposed to help me tell me I couldn't do things that others in the church could do because "You have autism and because of the autism you lack empathy and might unknowingly offend someone." Forget the fact that they sent me for ABA therapy. Forget the fact that they didn't even bother to give me a chance before they just wrote me off and completely excluded me unless I agreed to sign a document agreeing to be permanently excluded from an activity non-members were allowed to do and reminding me that I was never forgiven and never going to be forgiven by the man in charge there. Forget that. Because that's not what bothered me the most an not the root of the reason I left them to find a better place, a safer place, until God changes their heart song and they establish special needs ministry for both children and adults. And I don't know if I have told Tom the root reason because up until now I never really understood the root reason myself. It wasn't just the document. It wasn't just the actions. It was the attitude. Many times last year I slapped God in the face. Many times last year I said I wished I was normal and hated how God created me. Until one third of that group finally told me to read Max Lucado's "You Are Special." Why? Because she had the same conversation with her own daughter. Her daughter has Down's. But when I looked at her daughter, I didn't see Down's. I saw a beautiful young lady with a lot of potential because she had a mom that was fully invested in her. But before that person moved, she told me that I needed to consider going somewhere else that was more accepting of people like me. And I realized that she was probably a little worried about what could happen to her own daughter there. Because until a person either has a loved one with special needs or takes time to educate themselves, they will always only ever believe the misconceptions. Which leads me to another point.

4. Tom, thank you for moving beyond awareness of autism with me. Thank you for educating yourself. And most of all, thank you for being my friend. I know I don't always show it, but I appreciate it more than you'll ever know and I love you for it. You have accepted me for me and looked past my labels at the person that God is growing me to be. You have given me freedom to make mistakes yet stayed beside me when I realize them and come running back for help processing things. You have exemplified God and Jesus and I am growing closer to them as a result. Although I'm not where we want me to be just yet, you are not rushing me before I'm ready, but neither are you holding me back when I am ready. You saw potential in me, and rather than give up because I might be slower than others, you kept encouraging me and spurring me on. And in part, because of you, I have learned determination and courage. You believed in me when others didn't. You took a risk to stay friends with me, and now look where things are: you have been seeing me through a lot of firsts! Many milestones and successes. And I'm a better person now than before. I see God through how you treat me. And God is awesome and I want more of Him. I'm still going to run back to you sometimes, but I'm running back and forth now. At least it's a start.

Finally,

5. I ask prayers. For a while now I have been feeling a nudge to return to NYC for a week or two for missions. Then I received a calling last year to do something for people (both children and adults) who have autism like I do. Currently, I am now leaning toward pursuit of becoming a licensed interpreter for the Deaf and so during this coming summer I will be going back and forth between two churches, the one I plan to join and the one I will do cultural immersion in while class is on summer break. Probably just once a month for now unless I can hit more 8:00 services then fly over to the other church. I will be juggling at any rate because it's not the first leaning toward interpreter that I have had. I think it's stronger now because I know I have autism. But here's the thing. I still have a call. And God is starting to open the doors. I started painting. And Tom knows because I told him, but I plan to start selling my art under Essie Spann, Art for Autism. And part of the proceeds will go for organizations including churches that currently are serving or are planning to start serving adults with autism. Why? Because children with autism grow up and there's not a magic wand to make the autism automatically go away when they become adults. And continued ABA therapy, speech therapy, occupational therapy can help. I'm in ABA. I'm about to restart speech. I'm going to be starting back with the psychologist who tested me. And at some point, I might start OT, but for now, it's one new therapy at a time. But because of the difficulties I have been having in finding services, I want others to have it easier. Also, some of the proceeds will go towards missions projects, especially ones that help with special needs and autism. My first steps are happening now. But I'm not done yet.

Dear God, thank You for answered prayer last week with Tom's daughter's wedding. Please help bring back some of his sanity. I look forward to scheduling another visit with him soon and even finding a special time to see him for a good-bye before he goes on his trip around the globe. Also, I'm hoping he'll be able to see me "graduate" and do my membership vows in the next month or two. Forgive me for how I sinned against both You and Tom when I was jealous last week and thank You for reminding me why You put Tom in my life first as a friend and second as a father figure/role model/example/mentor. Thank You for giving him a good heart, strong enough and big enough to love me even I am not the most lovable and for him being teachable so he learns how to love me better as a friend as I also learn how to love him better as a friend. And God, I don't know if I have said it to You yet, because I am still learning, but God, I love You. Thank You for loving me too, loving me bigger. In Jesus' Name, Amen.



Wednesday, April 17, 2013

I Really Am Human After All

Autism. Whoo hoo! Well, not all the time. But why do I title this post as I do? Maybe because for the first time this month, I have actually shown emotions that "people with autism don't have." Stupid misconceptions and even more stupid people who actually believe the misconceptions as opposed to actually getting to know the person. After all autism is a spectrum disorder which means no two of us will be the exact same! A rainbow is a spectrum of colors, right? It's not all blue or green or purple or whatever color. Right?

This month I have encountered love. Not love from friends. But love for a person who is not a friend. A crush if you would. Yep.

Today, I am experiencing my first jealousy. Toward a friend because he has a happy occasion this weekend and I lost my friend because of it which isn't fair that I lose my friend just because of the occasion. So there, I have jealousy. An no, it doesn't feel good. But until my friend talks with me and helps me process through this new emotion, I can't do anything about it. It's already a nightmare. Or a daymare.

Because now I have jealousy on top of the anxiety I already have because he'll be leaving soon for almost two weeks and I don't know if I will get to say good-bye to him before he leaves, and I know when he's gone I won't get to talk to him at all, an I also don't know if we will get to have a visit when he gets back because we haven't scheduled anything yet and he didn't call yesterday like he was supposed to and now I'm just scared because I don't know if we will ever talk again because he screwed up this week and I don't know if we're still friends anymore.

The only way we can move past this is to talk. WITH EACH OTHER. But if he won't talk to me, then I guess we'll never move past this and that we'll never talk to or see each other ever again and that he was never my friend to start with which will really hurt if that's the case, but what else am I supposed to think? He hasn't exactly been very helpful lately calling my feelings "vain imaginations."

You know what he could've done that probably would've helped things not explode? He probably could've sent a text message explaining that he would not be able to call as previously planned because of whatever the reason but that he would call me on whatever day next week. You know what he could do to help ease the anxiety about him leaving? He could call or text and we could plan a day and time that I could see him and say bye to him before he goes and we could go ahead and tentatively schedule a visit that I could look forward to for as soon as he gets back.

But instead, he hasn't done that and that lack of action has exacerbated things which caused a meltdown.

Now I'm not sorry that I feel these emotions. They are, after all, REAL emotions and they make me human. However, like all humans, I sinned today. But I can't ask for forgiveness because I know I don't deserve it. However, if he is my friend, I can hope that he will offer forgiveness anyway.

His turn.

Sunday, April 14, 2013

StadiumFest Part 2

Aside from some lady claiming to be a Christian complaining about noise on the StadiumFest Facebook page (wah!!), tonight was awesome!! By the way, in defense of the event staff, Spain Park is the most centrally located venue in the Birmingham area. The Hoover mayor was there and Hoover police was there as well. And no noise ordinance laws were violated. So the woman complaining won't change anything. God still used the contemporary Christian "noise" as she called it in a "neighborhood."

She actually had the gall to assume I'd complain if a rap artist was in my "neighborhood." Nope. Because if I know about it as was the case with her knowing about StadiumFest, I have options. Stay home and complain or attend or make other plans.

StadiumFest is like the Christian version of Alabaster CityFest. Every year, CityFest diverts traffic and I can hear it if I go outside at my house. But rather than complain, I can either go or I can make other plans.

I'm laughing at the fact she has complained on their page and complained and argued on every post defending the event and praising God for what was done through this one channel!

Anyway, Britt Nicole was awesome. A little hot from the warm Alabama temperatures today but still awesome. I don't know many of her songs though, but she performed "Gold," of which Nickelodeon has been airing the video. Favorite line: "You're worth more than gold."

I wasn't very interested in the acts that followed although I did enjoy Crowder's performance of "I'll Fly Away."

Newsboys? I was up there close with the crowd! They did old favorites like "He Reigns" as well as new favorites like "God's Not Dead." They really rocked it!

And let me remind you that contemporary Christian music is just as much a channel for God's voice as grandma's old Southern gospel hymnal music. It happens to be more appealing to the younger audiences (guessing the 50 and under crowd although a much older man screamed louder than me!).

Anyway, I will actually do one more post to follow because I need to get some sleep so I can go to Sunday school and hopefully church in the morning!

Friday, April 12, 2013

StadiumFest Part 1

I have to say Jamie-Grace was the best so far. I couldn't stay past her set tonight. Apparently hay showed up around the scene and I had a reaction. But she performed several great songs off her CD, including God Girl, Hold Me, and With You. She also shared a little about how she struggles with ADD and Tourette's as well as anxiety. For me, this hit home as I have my own challenges to learn to overcome. One of the most recent diagnoses was the autism (which you can now see some videos that demonstrate the episodic meltdowns on my YouTube channel. I decided to get really real in them.).

Tomorrow, I return to StadiumFest to help in the children's area (although if I react too badly to the hay, we may have to get creative and reassign me somehow). Britt Nicole and Newsboys are my two artists tomorrow that I look forward to seeing.

One thing I want to note is how the event is not the most sensory friendly, and I will either do a vlog or a blog post about sensory friendly next week.

So meltdowns. It has been a frustrating week all around. I've not been feeling too well (sinuses again), allergies, weather changes, traffic and road construction, a friend and the fact that I'm frustrated he has yet to answer a couple of questions I've actually had the past two weeks, who so far has just been all "stop with the drama," still no answers though, VR related stuff and being called "unwilling," which was a misjudgment of unable due to recurring infections. But I committed the other day to capturing some of the meltdowns and stims so people can get a better idea of what those are like.

Oh, and yes, at concert events, you'll often find me on my feet moving to the music, singing, and flapping or tapping. But at church, if the music isn't upbeat enough (translation: if the music is what my grandmother would have sang in the 1950s), I'm too understimulated and likely to be found slapping myself or trying hard not to vocally stim). Again, more about that next week as well.

I do look forward though to posting more tomorrow after StadiumFest.








Thursday, April 11, 2013

Spring, Love, Weddings, Growth, and Tom

Ah! Spring! God gave us spring to remember renewal of life.

Love! Spring is a reminder of love as many people get married during this time of year.

To be in a relationship. That is a human desire. God created us to be with others. After all, consider Adam. God saw it fit to create Eve.

But relationships are not easy. For some people, relationships are scary and painful. Especially for people who have autism.

You know what though? I have a great friend. He has been diligent. He has consistently been showing me what friendship is. I miss him right now even though we talk. A lot. But he is also a father figure right now. Which is really awesome.

He has really been a blessing and an encouragement at a time when I have felt so alone in the world (right now). And I have been through a lot the past couple of years. I have also grown a lot the past couple of years.

"I'm proud of you." Next to "I love you," no other words mean so much to me. Those words lift my spirit even on a rough day.

And you know what? My friend might be turning 53 this summer but here's the neatest thing: He's also growing. He has grown so much in his understanding and appreciation of me that it has started having an overflow so that I can appreciate him in return along with others. And that means so much more to me than anything.

His kindness and graciousness and forgiveness to me, his gentleness and patience with me, these are all things I have started seeing with God too. Before, God was just this scary personified being somewhere in the sky waiting for me to mess up so He can strike me down. But now, I see love, care, and generosity.

And sometimes, that's all it takes. The kindness and love of ONE person.

Although I would feel better if I knew if and when he and I can and will be able to have some in person time again. My heart really misses him right now even though he's so close (distance).

But we celebrate two things (well, more than that, but still): God growing my heart so that I might actually be ready for relationships with others (I'm smiling because my friend has fallen into father mode with me because I have developed a crush on someone close to my age, and my friend has been very playful about it because he's getting to be a prime example of what a godly man is, and honestly, my friend is an example of what I want in a relationship). We also celebrate the upcoming wedding of his middle daughter.

And now I have something to say to him directly: Tom, you're ready for this. You can do it. You're not losing a daughter but gaining a son. And you have a heart that God is growing. You have taken me under your wings in the process. So essentially, you gained another kid along the way. As long as you have all of your kids, be they biological or not, you are not ever going to lose any of them even when it's time to let them take flight on their own. I hope it makes sense to you what I have just said because I stink at sentimentality. And I'm not sure I understand what I said!

Dear God, thank you for my friend Tom. Thank you for his example. Be with him during this time. May he be reminded of how proud I am of him too. He didn't want me to take flight at first, but he let go and I'm starting to soar. As he has seen with me, the baby bird always comes back to its imprinted parental figures. Even when we are released, we still come back. The goal is that over time, we need him and others less as we grow into ourselves. And he has told me a lot lately that I am starting to grow into myself, into who You created me to be. Be with him next week. Give him strength. Be with him when he goes on his upcoming trips and bring him back safe. And please if You would, allow us time to visit in person again when he returns from that. In Jesus' Name, Amen.

StadiumFest This Weekend

Come hear and see great artists like Jamie-Grace ("God Girl"), Britt Nicole ("Gold"), Switchfoot, Crowder, Newsboys ("God's Not Dead"), among others. Friday night and Saturday. During the day Saturday, there will be activities for the kids! The culmination of Saturday night will be fireworks. It is a FREE event, but you might want money for concessions and/or food trucks! Bring friends, family, anyone really.

Tuesday, April 2, 2013

Hi God

Hi God! Are You there? I wanted to tell You thanks for helping my eye reach 80-85 percent improvement. But please keep working on it so I will have complete restoration of my vision.

God, I want to apologize for the times I have wished You didn't create me the way You did. My friend Tom really encouraged me the other day and now we're both able to have wonderful conversations about the insanity of wedding preparations (why do women always seem to feel they must torture themselves to look good for all of a few hours in some fancy expensive dress they'll never wear again anyway?). Tom, if you figure that answer out let me know but after hearing what your observations are, I'm thinking shorts, t-shirt and flip flops are going to be wedding apparel if God ever brings me anyone. Haha!

Anyway, God, today is World Autism Awareness Day and Light It Up Blue. Thank You.

As more people become aware of and get educated about autism, more churches might start ministry outreach to individuals on the spectrum and their families (children and adults).

Anyway, I mostly wanted to say thank You. By the way, Tom, thanks for the perspective!

In Jesus' Name, Amen!

Monday, April 1, 2013

God and Autism

If you follow my YouTube channel (TheSes31), you will see a series of videos called Stop! Look! AND LISTEN! The inspiration of the videos began with my wonderful friend Tom. We were talking and he commented how one of my gifts is painting (I am fairly new and my friend Janet helped me with my last finished piece but you will have to ask Tom to show it to you). But I then commented how painting was a challenge to overcome. He asked what I meant so I explained that I have texture issues, particularly slimy textures and paint is slimy, but painting is helping to open the door to possibilities of introducing new foods in my already limited diet (I still don't like mushrooms even though I learned I'm not allergic to them. World's most vile whatever it is. Yuck!). So them we got to talking about some different slimy foods. Anyway, it was this discussion that inspired my video series.

April is autism awareness month and April 2 is World Autism Awareness Day (Light It Up Blue). I also thought my videos could give a personal insight into what being an adult on the spectrum is like.

Do you know that about a year into ABA therapy I am a lot better off now than I was last year? The Susan that Tom knows right now is a different Susan. One year ago, I could hardly look anyone in the eyes, was barely verbally communicating needs/desires/wants, was lashing out a lot because I didn't know how to communicate because I didn't know how to identify my feelings or the triggers of my feelings, and I was barely smiling. I still have a long way to go before I can even attempt a J-O-B, but I have made progress. Today, I am still moderately verbal (I don't communicate as well verbally as I do in writing and I still am not verbal with people I barely know (like at the new church)), and tragically, when reviewing an application for Camp ASCAA, I determined I wouldn't be eligible for regular camp because of my lack of verbal communication with people I barely know. If I got hurt, how would I be able to express my needs if I can't even verbally identify what caused the hurt?

But Friday was Good Friday and yesterday was Easter (my first REAL Easter by the way). My last video to date was about Autism and God. Let me just say this, creation is like autism. God had a set order, and no two things are exactly alike, and all the colors, and well, the platypus. In some ways, I feel God has autism. And most of us on the spectrum are very in tune with nature. If you go for a walk with me in Heardmont Park (and if you haven't done this yet, summer's coming so make arrangements with me), we will talk some but mostly we will observe and listen. I hear God in nature. I hear God when Tom talks with me and we're working through some heart issues. I hear God in music.

And even though some of us on the spectrum are not verbal or not as verbal, we still communicate. But like trying to listen to God, you sometimes have to listen with heart rather than just with your ears. And Tom, if you're reading this, you're ready to do heart listening in our friendship. Because I'm ready to let you.

That is why my video series emphasizes listening so much. Because once you learn to listen, you then gain understanding of the challenges we face on the spectrum. The world is noisy. My mother is learning this herself now. It's never too late to learn to listen.



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