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From Inside the Puzzle: Raising a Child with Autism Blog

Stage IV
November 4, 2015 12:25 PM by Devon Alley
I would like to apologize to my readers for my lack of entries and posts over the past couple of months. As a writer, I don't really believe there's ever a *good* reason to *not* be writing, but if there was one, I feel like I would probably have it right now.

My mother - and A.'s grandmother, whom she has affectionately called "Grasshopper" ever since she was a small child - has been diagnosed with stage IV lung cancer.

The family is still reeling from the news, and I'm not entirely sure just how much A. truly grasps and understands. I've been reluctant to clarify the details, partially because I'm still trying to wrap my head around it all myself, and partially because I'm nervous as to how A. is going to react. She's so fiercely empathic, and she can be incredibly dramatic at times. Let us remember, this *is* the girl that was absolutely convinced and likewise despondent that the world was going to end in December 2012. While she has grown and matured a great deal in the past three years, I can't help but worry as to how she'll be able to deal with the possibility of grief and loss. We've been fortunate enough to have completely avoided these topics so far - we haven't even lost a pet yet - but they are topics we will have to deal with eventually; possibly much sooner than we would like.

The good news is, all things considered, my mother is doing incredibly well. She's going through chemo, and she's also on a trial drug that has had great results in testing so far. She's weak, and often feels sick and tired, but her attitude is great, she's relatively healthy, and the doctors seem optimistic that she may have several more years to spend with us. 

This, of course, is one of the major reasons why I'm reluctant to bring the seriousness of her condition to A.'s attention. Why burden A. with unnecessary worry and stress when it's very likely that "Grasshopper" will live to see her graduate high school? Possibly even college? Possibly even attend her wedding?

My husband, Thomas - always the pragmatist, and always the rational one - points out the obvious. Are we not robbing A. of making mature, rational decisions on how to process the illness, and on how to spend her time when she's around her grandmother? If we don't clearly explain the situation, how will A. feel if things *don't* turn out for the best? If A. doesn't know the details, how will she know to make the most out of every single minute she can spend with her grandmother *right now*?

There are definitely more conversations that need to be had. There are more therapy appointments to attend. There are more family visits to make, more road trips to travel, and more holidays to celebrate. And there are many stories I want to share with you about A.'s adventures over the past few months - to DragonCon, to the beach, at Halloween. And I hope you will be patient with me, as it may take just a little longer than usual to get those stories out.

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Relaxation Class
October 5, 2015 2:27 PM by Devon Alley
There is an amazing local autism group in our area, called Artistic Spectrum, that focuses on providing creative and recreational opportunities for children and adults with Autism Spectrum Disorders. A. has participated in many of the activities provided by this organization in the past couple of years - from painting pumpkins, to watching A Christmas Carol, to participating in summer art workshops - and we continue to find really rewarding activities through this organization. Our most recent adventure involved taking a basic relaxation class through the organization at a local yoga studio.

The class was, essentially, a basic yoga class. It was an activity A. was not very keen on participating in, but I managed to convince her. She actually did very well. The class focused on the importance of breathing and the wisdom of listening to one's body to make sure you are getting whatever you need.

A. was especially adept at folding up into Child's Pose whenever she felt like a stretch was simply too much for her. She also followed along with the poses of the class with minimal complaining - she seemed to really enjoy curving and curling her back into the Cat and Cow positions, while she struggled more with the poses that required her head to be down, and for her to stretch to the floor, such as Downward Facing Dog - and it did seem to truly relax her and help her regulate the stress in her body.

Even though she felt like she didn't do a very good job with the yoga class, I was very impressed with how much she was able to do, and the process really did help her. I also managed to convince her that she should come with me to at least one yoga class a month, so hopefully I can help her make this an ongoing healthy h


I'm definitely looking forward to more of the amazing work that Artistic Spectrum puts together for the autistic individuals in our community.

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A.'s Sweet 16-bit Party
September 4, 2015 12:54 PM by Devon Alley

I have a history of going all out for A.'s birthdays, and considering that she was going to be turning 16 this year, I wanted to make sure it was extra special. A. said that she wanted to have a video game themed party, featuring some of her favorite games (Mario, Pokemon, Pacman, etc.) So, I got the idea to call it a "16-bit" party (since she w

After visiting Party City and other various department stores, I quickly realized that I would have to make most of the decorations myself. I ran around town gathering supplies to create some pretty extensive decor. I purchased square shipping boxes, and then I covered a few in brick contact paper, and others in yellow card-stock with white question marks pasted in the center. I cut out a large Pacman and ghosts from cardboard and hung them from the ceiling.as turning 16 - get it?) and I consulted my party inspiration (also known as Pinterest) and got to work.

I created a Bob-omb from a Styrofoam ball that I spray-painted black, pasting construction paper for eyes and feet, and then covering a bottle top with tin foil and using a piece of twine for the fuse. I created piranha plants with green plastic cups, green pipe cleaner, shredded green and brown paper, and construction paper.

I put together snacks and gave them clever names (Runts candy became Pacman power-ups; I wrapped chocolate bars so that they looked like original NES controllers.) I also taped King Boo faces on white balloons and stuck them throughout the house.

We invited the entire family, and A. also invited a couple of her girlfriends to party and to spend the night. They played games, including punching a question-box piñata, and some multi-player Smash Brothers. There was cake and presents, and A. seemed extremely happy - laughing and having an amazing time. Overall, I think the party was a huge hit.

I'm not sure how I will outdo myself next year! 

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First Week Back
August 17, 2015 9:52 AM by Devon Alley
Last week, I shared my concerns about A. returning to school. She was highly anxious, and there were several challenges she was going to have to overcome in order to be successful.

Now that she's completed the first week, I am happy to report that she has managed her anxiety and is doing well in the classroom so far. She still has complaints, of course. While she, fortunately, doesn't share any classes with the girl who stopped being her friend last year, she still sees her in the hallways from time to time, and it's still a very painful reminder. But she's managed that piece much more smoothly than she feared, so that's great.

In her last class of the day, which focuses on life skills and social development, she is the only girl, and she finds several of the boys highly annoying. She's also expressed some frustration with her theatre teacher for saying that she doesn't "believe" in multiple choice tests, and she has her regular frustrations with peers being loud. However, considering how stressed out she was at the beginning of the year, and how much of that has subsided after the first week, I will call it a win.

I feel like we owe this in large part due to the new members of her team this year. She has a new caseworker, and there seems to be a new person over special education in the school overall. Thomas and I had sent an email to them a few weeks ago, and they responded immediately. Her caseworker touches base and works directly with A. every single day. Not only did they rearrange her schedule to accommodate a time for decompression at the end of each day, but they also have worked with A. to ensure that she knows where she can go to for support each period in case she becomes overwhelmed and needs to step out. Her new caseworker is also working on a possible peer tutor for A., which I think would be a big win for her. I'm imagining that this peer tutor would not focus on academics as much as conversation and socializing -how to talk about things she's not interested in, etc. We'll see how that goes.

Overall, I couldn't be happier with the way things have been progressing so far, even if A. still doesn't really like school and complains about it all the time. At least she's not completely miserable and depressed, which was my big concern at the start of the year. At this point in the game, I'll take whatever positives I can get!

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Conventions and Cosplay
August 7, 2015 10:56 AM by Devon Alley

Last year, A. attended the Knoxville Comic and Anime Con, of which I wrote an entry about in this blog. Because she enjoyed that experience so much, I decided to make sure she continued to attend even more conventions this year.

We took her to the Marble City Comic-Con, as well as the Fanboy Expo.

A. thoroughly enjoyed both, even though she did not have the same benefit of having friends to pal around with this year.

For Marble City, she brought her notebook and went around collecting the autographs of everyone who was dressed up as characters she found interesting.

This is similar to what she did the year before, and it was awesome to see all of the attendees going along with her and playing up their roles.

For the Fanboy Expo, however, she wanted to dress up and do her own cosplay. After some consideration, she decided to dress up as Chell from Portal 2, and she did a pretty amazing job.

It was fascinating because, at the Fanboy Expo, A. was suddenly the one getting all the attention. Everyone stopped her in the aisles and asked to get their picture with her. She received so many compliments on her costume.

While I walked around awkwardly with my arms full of baby, weaving in and out of the crowds without a clue on how to engage people, A. navigated the social landscape with little trouble.

This was her turf, and she understood the rules much better than I did.

A. said that her experience at the Fanboy Expo was the best convention ever. We'll see if that holds out after our experience at Dragon-Con next month.

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A Visitation from California, Part 2
July 28, 2015 12:15 PM by Devon Alley

(This is part 2 of a 2-part series.)

Last week, I discussed the main events that occurred with M. and his mother visiting us from California. However, there were so many other small moments that I felt were, ultimately, so much more important to M. and A. 

M. not only brought A. a rose, but he also brought a unique, hard-to-find plush that depicted her favorite Pokémon character. As we drove them around on their adventures, they shared ear buds and watched videos and cartoons on their phones and his iPad. Courage the Cowardly Dog seemed to be a common theme. They Skyped other Internet friends together. When we were home, they would play Mario Kart, Smash Bros, and Doctor Luigi for hours. Their interests could not have been more in sync.

Even though they shared a lot of similarities, they also had a lot of differences. M. is a bit of a collector - he brought an entire suitcase full of plush toys to play with while he was visiting, and that is apparently just a small percentage of what he owns. A., on the other hand, tends to get rid of things as she loses interest in them. A. also doesn't care much for keeping things in "collector" shape. For example, one of the most thoughtful gifts M. got for A. was a personalized Coca-Cola bottle with her name on it shipped directly to the house, and he was baffled when her first action was to open the bottle and drink the cola. 

They were both very affectionate with each other for the entire visit, but they were also very vocal about when they needed space for a few minutes to regroup. They were mindful of each other's needs. It was sweet to watch the two of them navigate the complicated social landscape of romantic interaction, and it was also amazing just how well they were able to do so.

It definitely isn't your typical high school romance, but I could not have imagined a better match, and I could not have wished for a better first boyfriend for my eldest daughter. I'm so very grateful they found each other, and that they had the opportunity to spend such a wonderful week together.

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A Visitation from California
July 20, 2015 3:03 PM by Devon Alley

(This is part 1 of a 2 part series.)

These past few blog entries have focused on A.'s online relationship with a boy in California who is also on the spectrum. This past week, M. and his mother flew all the way to Tennessee to visit us. It was the first time A. and M. met each other in real life, and I had a bit of apprehension about the visit - What if it went badly? What if they were both overwhelmed? Needless to say, my worries were unfounded, and they both had an amazing time.

We met them at a local restaurant on Tuesday. As soon as we arrived, A. and M. ran to meet each other with enthusiastic hugs. It was incredibly adorable. The two of them sat down at their own table, began quoting from their favorite Internet videos, and when they needed to release some energy, they both paced around the back of the restaurant, almost as if in time with the other. A. carried her video game plush character with her everywhere, and M. did the same. They both spoke to each other in very blunt, to-the-point language, and they shared similar rehearsed-sounding laughs. It really seemed as if the two were made for each other.

On Wednesday, we carted the kids off to Gatlinburg/Pigeon Forge/Sevierville, where they explored indoor water parks and other amusements while we moms found other ways to amuse ourselves. On Thursday, we had a rather failed attempt at visiting Dollywood, even though M. was so very sweet and patient with A. and her paralyzing fear of insects.

On Friday, we went back to the mountains so the kids could explore further indoor amusements, and then we visited my in-laws out in the country. M. managed to convince A. that it wasn't so terrible to be outside, and at one point I looked out and they were way down the hill and in the middle of a cow pasture. I never would have dreamed in a million years that A. could be convinced to go that far away from the indoors.

Saturday, the kids had a quiet day indoors, and we ended the evening at a friend's house shooting off fireworks. On Sunday, they said goodbye, and M. and his mother flew back to California.

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An Online Romance, Part Three
July 13, 2015 4:37 PM by Devon Alley
One of the biggest pieces of news that has occurred in our household in the last year has been A.'s budding long-distance relationship with M., a friend she met on the Internet who lives in California. She has yet to meet this young man, but we are looking forward to a visit from him within the next few weeks.

I'm fascinated about the fact that A. has developed a romance over such a long distance with a friend who is also on the spectrum, but I felt awkward talking about the situation as an observer, and as a parent. I thought that, instead, I would interview A. about the situation, and let her explain in her own words. What follows is part three of this interview.

Q: So, would you consider this a serious relationship? 

A: I want to make sure it's as genuine as possible. You know - generosity?


Q: So, M. is also on the spectrum. Do you feel like you understand each other really well?

A: Mmm hmm. If you have the same interests, chances are you might have a great friendship, or possibly more than that.


Q: What is your biggest worry?

A: You know that people have thoughts about suicide and all? When people get depressed, I always worry that chances are that people would want to commit suicide. He tells me that he would never do something like that. But I still worry when he has the bad days. I hate to see him upset.


Q: Do you talk to him about your feelings?

A: Yeah. We give each other comfort and hugs - tons of hugs; all of the hugs.

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An Online Romance, Part Two
July 7, 2015 2:42 PM by Devon Alley
One of the biggest pieces of news that has occurred in our household in the last year has been A.'s budding long-distance relationship with M., a friend she met on the Internet who lives in California. She has yet to meet this young man, but we are looking forward to a visit from him within the next few weeks.

I'm fascinated about the fact that A. has developed a romance over such a long distance with a friend who is also on the spectrum, but I felt awkward talking about the situation as an observer and as a parent. I thought that, instead, I would interview A. about the situation, and let her explain in her own words. What follows is part two of this interview.

Q: What's the worst thing about having a boyfriend on the Internet? 

A: Why would anybody say that? I mean, there are usually bad days, but eventually they'll get over it. If you're always there for them, chances are they're going to be there for you, no matter what happens. And yes, we do have bad days, but in the end everything works out. Because you know why? We cheer ourselves up. It's important to do that when you're in a relationship.


Q: What do you mean by "cheer up?" 

A: I show him funny videos; I draw him some love art of me and him.


Q: Which is better -- making friends on the Internet, or making them in real life? 

A: It depends, really. People argue on whether you should meet them in real life or just on the Internet. I think that's a bunch of bull crap. I think you can meet a person wherever you want whether that's in real life or on the Internet. I hope to meet him someday.


Q: Do you think it's easier for you to have a romantic relationship over the Internet? 

A: Well, I don't know. It's hard to be in a relationship you know, that is if you want to keep it healthy. Because I've heard some not so peasant endings to a relationship, and I want to make sure that never happens to us.


Q: What will you do to keep that from happening? 

A: Simple. Be there for him every single day. Whether he be down or whatever mood he's in, I'm always going to stick by him, no matter what happens.


Q: Do you feel like he's there for you too? 

A: Of course. We love each other very much.

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An Online Romance
June 30, 2015 10:12 AM by Devon Alley
One of the biggest pieces of news that has occurred in our household in the last year has been A.'s budding long-distance relationship with M., a friend she met on the Internet who lives in California. She has yet to meet this young man, but we are looking forward to a visit from him within the next few weeks.

I'm fascinated about the fact that A. has developed a romance over such a long distance with a friend who is also on the spectrum, but I felt awkward talking about the situation as an observer and as a parent. I thought that, instead, I would interview A. about the situation, and let her explain in her own words. What follows is part one of this interview.

Q: Describe M. What's he like?

A: Funny. Imaginative. He's an amazing voice actor. We have the same interests, and we like to make each other laugh.


Q: What are his interests?

A: Mario, Pokemon, Castle Crashers, Shovel Knight...lots of video games. And music. And TV Shows.


Q: Where did you meet him?

A: Deviant Art. He was browsing through a lot of stuff when he found some Castle Crashers fan art that I had done, which was a picture of the Conehead Groom, which he liked very much.


Q: He lives pretty far away, right?

A: Yes.


Q: How do you go on dates?

A: It's simple. We use voice chat. We like to pretend that we go to movies. We look up stuff on YouTube, and we usually like to make hilarious commentary. We usually like to just quote our favorite scenes from it.


Q: What's the best thing about having a boyfriend on the Internet?

A: You get to see what they're doing and all. You can check on them and see how they're doing, plus you get to hear their hilarious stuff and kind words. Of course, the Internet can be dangerous, but we were both careful.


Q: How were you careful?

A: We didn't talk about too much inappropriate stuff - like something too personal, because we know how it feels. We handle the stuff maturely. You have to be careful what you're saying, because if you say something that might make them uncomfortable, it's not going to be a pleasant ending.

(This is part 1 of a 3-part series.)

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Maturity and Optimism
May 11, 2015 10:07 AM by Devon Alley
This past week was a rough one. I was working long hours each day, and A. was having a crisis at her school. One of her good friends, E., stopped having anything to do with her. I'm still not sure what happened. As much as I can gather, other students have started a rumor that A. is, in fact, NOT autistic, and it seems like E. might believe these rumors, and is upset and stressed about the idea that A. may have lied to her. Whatever the reason, A. has lost a friend, and she feels pretty devastated about it.

When she called me sobbing on Friday, I decided to allow her to leave school early. My amazing mother-in-law picked her up, brought her home, and hung out with her for a while. She told A. to try to focus on happy things in-between the feelings of sadness.

I was able to leave work a little early, so A. and I went shopping, and then we went out for ice cream. As she talked to me about the situation at school, I was really impressed by her maturity. She said she was very sad about losing the friendship, but that she had to accept it. She didn't seem to be angry at all - just hurt and confused. 

As we sat and ate our ice cream, A. opened up a little. She told me that she was really lucky to have me as a mother. I thought she was going to say this was because I'd let her leave school early and was getting her ice cream before dinner, but she didn't even mention it. She told me I'd taught her how to be mature and optimistic. It was humbling to be on the receiving end of such gratitude, and I responded in kind - that I was grateful that she was my daughter because she was so compassionate, thoughtful, creative, and fun to be around. We finished our ice cream and went home, both feeling much better.

It was a very sweet and touching end to a rather emotionally exhausting week.

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Her Podcast Debut
May 4, 2015 9:33 AM by Devon Alley

Recently, A. was a guest for my friend Elle’s podcast: Into It. True to the overall theme, this episode focused on one of A.’s very favorite subjects: Pokemon.

I’ve mentioned Elle on this podcast before. A. is her goddaughter, and she’s been a close friend of the family for decades. I think that was part of what made A.’s presence on this podcast episode so successful - the level of comfort that already exists between the two, paired with Elle’s ability to mine A.’s conversation for the focus points and important themes. Elle was a gracious host, restating main ideas and asking good questions, allowing A. to be expressive without totally derailing the episode. 


And it worked. A.’s autism is never mentioned, and while I can hear the echolalia in her vocal cadence, it is blended with the enthusiasm and passion of a young person in love with the topic she’s discussing. She can also be very witty, making jokes and adding humorous turns of phrases that are designed to entertain. When she talks about the Pokémon Tyrantrum, for example, she says, “It’s a frickin’ T. Rex. What more could a person love in life?”


And even though A. is the youngest guest that’s ever been featured on Into It, she still carries herself with more maturity than I would have expected for her years, and I can believe when listening to her speak on this episode that she truly is about to learn to drive a car, go to prom, and start applying for college.


Not to mention, after listening to this episode, I think I finally have a true understanding of this complicated universe of Pokémon – which, of course, is really the whole point of this podcast.

Check out the Into It podcast and A.'s amazing interview.

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Just Like Me
April 27, 2015 12:37 PM by Devon Alley
You know how they always say that, when your children grow up into teenagers, they will be just like you? I must confess, when it comes to A., this is absolutely true.

I'm blessed in a way, because I happened to be a very well-behaved teenager. I minded my mom, my grandparents, and my teachers, and I worked hard to be a good student. However, I also hated the bureaucracy of the school system, the idea of authority in general, and anything that everyone else loved that seemed "mainstream" to me. I dressed in black, I hid under my headphones, and I spent my time writing pen-pals who lived all over the world, creating stories and poems out of the intricate universe in my head.

Likewise, my daughter is a well-behaved teenager. She works hard every day to listen to the teachers and do well in her classes. She complains, however, about rules she finds ridiculous, or peers who seem annoying, and if something is "mainstream," she wants no part of it. She doesn't dress in black, but she's constantly plugged into ear buds, and she spends her time chatting on the Internet with friends who live all over the world, drawing stories and digital artwork out of the intricate universe she's created.

Recently, I found a letter I'd written to one of my old pen pals. In that letter, I was complaining about how much I hated school - how annoying it was to have to spend my time learning useless things when I would rather be listening to music and writing letters to my friends. I also complained that "I haven't had a good ten hours of sleep in DAYS!" I laughed as I glanced at the clock, noted that it was almost one in the afternoon, and the teenager was still bundled underneath covers. That apple does not fall very far from this tree.

And I would not have it any other way.

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Writing Messages of Hope
April 21, 2015 1:07 PM by Devon Alley

A couple of weeks ago, A. started arriving home from school with various affirmations written all over her body. These affirmations proclaimed such positive thoughts as, “You are beautiful just the way you are!” and “You are loved,” and — my personal favorite — “Everyone is a composer of their own work.” The messages were written in black ink, in A.’s own handwriting, and they were a strange, much more positive echo of messages I had written on my own body when I was in high school, so very many years ago.



When I asked her about it, A. explained that she and one of her friends at school had started doing it in response to other classmates who write negative things on their body. A. explained that many classmates not only write negative things, but will also cut themselves, and cause themselves harm. A. expressed concern for these classmates, and worried that they might actually kill themselves. She explained that she wanted them to know that things will work out, and that people do love and care about them — and that they deserve to be happy.


It was such a gentle, touching demonstration of empathy that I immediately wanted to share it with people. A. was embarrassed by this idea, even though I eventually convinced her to let me do so. This told me that she wasn’t doing it to get attention — that, in truth, she wanted to express her love and support of people who might be going through dark times. And I understand that my daughter is not alone — there are many teens expressing similar sentiments in a similar fashion all around the globe. It's such a sweet idea, and a much needed sentiment in a world where more and more teenagers feel overwhelmed and hopeless. 

Autism Awareness, Autism Acceptance
April 3, 2015 4:21 PM by Devon Alley

Yesterday, April 2, was World Autism Awareness Day. Many people all over the globe lit things up in blue, shared blog posts, and donated money to various organizations in order to promote autism awareness and increase visibility for the condition. I personally know some individuals who participated in this autism awareness campaign, and I can tell you that, without a doubt, these individuals are doing what they believe is right, and are attempting to help autistic individuals in whatever way they can. In short, their hearts are in the right places.

Other people will be focusing on autism acceptance, instead. Many autism advocates and autistic adults are pleading for the world to move from a state of awareness into active acceptance. They explain that Autism Awareness campaigns tend to paint a picture of autism as a condition that needs to be fixed, that requires a cure, or that devastates families and creates hardships. What these individuals will tell you is that we need to create a shift in our culture from focusing on curing and changing autistic individuals to building networks of support and assistance to truly help autistic people throughout all stages of their lives. 

I'm not here to take a side, to publicly lambaste certain organizations, or to argue anyone's case. A. didn't even know there was anything special about April 2 -- her biggest concern yesterday was the aftermath of April Fool's Day, because the chaos and uncertainty of the day was very difficult for her to navigate. But as she grows closer to adulthood, I know that I hope for a society that is both aware of her needs and accepting of her personality. It makes sense to me that people are still celebrating autism awareness, if for no other reason than the world needs to be aware that we should accept autistic people as part of the inherent and amazing diversity of the human race.

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