Identity Crisis

It has been almost two years since I was referred for an evaluation for autism and was diagnosed. I was a little over 33 years and one month in age. 

During that time I was working with what I felt at that time had to be the worst group of people filled with the most hate possible. And I felt like church people were just cruel and heartless. I all but, and almost did, lose faith in God. 

I am not going to rehash anything though. But it did seem very unfair. Well, to be honest, there was a lot of unfairness in what I experienced. Diagnosed in December. Got told repeatedly I couldn't do certain things because I have autism and fill-in-the-blank with whatever misconception of autism is in existence. 

It was three or four months before I was finally connected and sent for ABA therapy. And I was only in therapy for four months when I got a fatalistic document. 

Three more months fighting the unfairness and I gave up and left. 

My friend didn't want me to go, but he let me. He knew I had to do it. He knew I was hurting and as much as he didn't want me to go, he knew that at that moment, it was what was in my best interest.

Now believe me, I gave him plenty of reason to give up on me, but he didn't. I praise him for his stubbornness. Why? Because if he hadn't been so stubborn, I wouldn't be where I am today.

So let me tell you what I have done in the ten months since leaving. 

1. I tried another church that has extensive special needs support for adults. 

2. I continued in ABA therapy.

3. I continued in a social group through Voc Rehab. 

4. I began to come out of my shell and make some friends. And I even began to develop a crush on someone. 

5. I began smiling almost endlessly. And have yet to find a person who doesn't instantaneously fall in love with me as a result. 

6. I decided I didn't need extensive special needs support. Just having a point person within the church who understands autism is enough and having friends in group activities and partners in service activities is enough. And that's true.

7. I began speech therapy. And now I have more confidence.

8. I missed a lot of church because of illness and because I simply didn't like it. 9. I started doing social outings outside of an official group and will pick up again after court.

10. I visited another church. It felt more like a concert than a worship service. I don't know why people like it. I hated it. It felt like torture.

11. I visited another church. I almost liked it until I learned that because I don't know exactly when I was converted and therefore may not have been baptized by immersion after conversion that I might have to be rebaptized. No thank you. But it's not fair to me to try to pursue it if that's going to be the sticking point.

12. I went back to the place I left. My heart never left it anyway because all my friends I already have are there. 

13. I have been doing a lot of self-discovery and self-exploration during this time.

14. I have developed more artistically. With the help of another beautiful friend. She helped me do a pre-wedding collage piece for my friend and revamp an old drabby three legged table converting it to a beautiful four legged table just the right size for a precious granddaughter of my friend. I am no longer afraid of paint getting on my hands, although if it's on there too long, I will start to meltdown. And I still won't touch raw dough or raw meat. And sticky mess is enough to send me for a tailspin as is a ticking clock.

15. I have less meltdowns and the meltdowns I do still have are becoming less self-injurious in nature. 

16. I am lashing out less. I had to work on an emotional color wheel assigning colors to emotions. I hated it. But I found it to be a good start. So now I do a chart. I write, "I feel...," assign colors and words to what I feel, and then state why I feel it. Then I go to the person who led me to feel that way. The chart helps me process so I don't lash out as often. 

17. I have more confidence now.

18. I am also hugging more people because I want to. Although I will pull back if it's not someone I feel safe with.

19. I am still afraid, but I will try anything once. I now like sushi and gluten free paper dosas (Indian). But I don't like wasabi (it burns the nose). 

20. I see the positives more.

All this to say that God is leading me back to where I was and I know that even though I have come a long way, I still have a long way to go, but I am working on it and will continue to do so. 

Thanks in part to my friends, especially stubborn Tom, who through their continual love, time, energy, and grace have exemplified God's character to me and allowed me to see enough of God to help me desire God more. 

So, even though I am really anxious right now over some very grow up issues I never had to worry about before, I am still hoping God will and trusting God to work things out. 

By the way, why did God let me have autism? I don't know. Some days I feel He did it to be cruel, and others I realize God may actually have autism too. PLATYPUS! Either way, God loves me and I love Him; my friends love me and I love them. And my friends have been, are continuing and will continue helping me along the path in life. Tom is my biggest advocate right now. And I thank God for him every day. I also thank God for Janet. And my mom. And my therapists. And even for the mistakes others made with me and the mistakes I made. We can all grow from those mistakes. 

I'm sure Tom and I will have many more discussions regarding church decisions that we have to make so I don't get hurt again and can continue progressing and avoid regression. And that's okay. 

And if that group of people is reading this? I love you. And I forgive you. And I hope you can forgive me too. 

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.

I Have to Play Catch Up Now I'm Better

Tomorrow will be my catch up post. Being sick is rough! Sinus infection. Severe. Mom said she nearly fainted when they told her how much the medicine was. I said, "Oh yeah, I forgot to tell you it was the expensive medicine and we haven't met the medicine deductible yet!" Oops!! Nearly $200 for 10 pills. And I can't start them until the morning because I need to sleep! The ENT sprayed stuff in my nose and it is helping me feel better already. Smily is back!

By the way, praise God for small miracles and forgiving friends like Tom. Seriously, if I could take him with me everywhere I would! Today I transitioned again. And now I got a book to help me with that transition. My mom got it at her parent group during my social group.

Have to get dog vaccinated. Sadly late due to cost. But definitely have to do it because later this year I have to board my deaf dog and cat with megacolon so I can do a weekend camp/retreat for special needs.

Definitely planning on selling art and maybe looking at doing puppet shows on donations so I can raise money for churches and other organizations to help them establish special needs ministries for adults, particularly adults with autism like me. As soon as I finish piece number two, it will go on semi-public display and anyone who sees it can make an offer on it.

I am feeling God moving me right now. I just don't have all the specific information. I think I'm starting to understand what missionaries go through!

Keep my family in prayers. Keep my friends, especially Tom in prayers. Keep praying for the little boy in south Alabama an for my family and friends who live and work down there.