Tuesday, June 13, 2017

April 15th- Daily Autism Post- Vacation Blip of a Post

I am tired and Dex is rocking this trip! Sometimes he blesses us with flexibility and the ability to step outside of routine with few struggles! So that's the post because it's all the energy I've got today.
The bad... I'm letting him eat whatever junk he wants and letting him video game it up.
The good... It's Easter vacation in SD so I don't care. He's out of routine and happy. I'm calling this a major win.

April 14th- Daily Autism Post- Siblings

Yes, there were two this day... making up for the missed one? 

The other day, I thought it would be interesting to make a video with Regan and let her explain some of the struggles of having a sibling with Asperger's. Obviously, I never posted the video. That's because it was boring. Regan just honestly didn't feel that there were any struggles. The best she could come up with was that she was more careful about packing his lunch to make sure that his lunch would work for him.
I can think of dozens of ways that their lives are impacted by Dexter's needs, but if they didn't bother her, I don't feel the need to bring them up.
However, last night was a perfect example of how Regan's life is impacted, and yet, is completely normal. Jabe and Dex were arguing. (Normal brother stuff.) Dex got upset, so Regan got him and had him go to her room, gave him a blanket, turned on Foo Fighters (one of his favorites), and told him to focus on calming down. While he laid there on her bed listening to music, she continued to go about her business, packing for our trip and putting away her laundry.
Is this normal for an 11-year-old? Probably not. Dealing with fights between other siblings is one thing, but helping your brother prevent a full-on meltdown, and knowing how to do it is another. I'm aware that it's not something most kids do. But this has always been her life. She doesn't look at things like this as dealing with autism. She looks at it as helping Dexter in the same way she'd help me make dinner or Jabe build a Lego city. She doesn't look at him and see autism. She just sees her brother. Sometimes they have fun. Sometimes they struggle. Just like her other brothers. This is why she couldn't think of how her life is impacted my autism. It's not. It's impacted by Dexter. She loves the good and helps fix the bad, just like she would with anyone else. May the rest of the world strive to be like her. 
The bad... he has struggles like the rest of us.
The good... he doesn't face them alone. He's part of a family that loves him and his siblings (although they make him crazy sometimes) have his back.

April 14th- Daily Autism Post- Aspie Honesty

Dexter- Mom, I love you so much. Hug me and pet Tori.
Me- I love you too, Dexie. SO much. I'm lucky that you are mine.
Dexter- I am too. I love Dad more though.
This conversation from earlier today isn't the first time he's told me this. I think most parents would be hurt to have a child say something like this to them, but if you really know and understand Dexter, there is nothing hurtful here.
First, Dex has a very limited number of people he likes to snuggle with and probably even fewer that he volunteers the words "I love you" to without being told that first. When he says it to me, when he asks for affection, my heart sings. I know that he means it. He DOES love me.
Second, for him, if he's saying something that is true, he sees nothing wrong with the statement. He's told me that Dad is taller, but I am wider. He's called an elderly woman "really old." He told someone who was yelling at their child that they were disrespectful. In his mind, we tell the truth. When you are stating a fact, it's true. Sometimes it isn't until after he says it that he realize that even though it's true, it may hurt someone's feelings.
Lastly, this doesn't hurt my feelings. It's not about ranking. (Let's be honest, I think Tori ranks above me too.) What it IS about is Dexter having someone that he loves deeply and he knows understands him. Not someone who is just compassionate, but really REALLY understands him. He has that in his Dad. He knows that I will be there for every meltdown, every frustrating day, every homework assignment he doesn't think he can do. But he can look at Shawn and see someone who is different like him. It doesn't make me sad that he says he loves Shawn more. Not even a little. Every time he says it, my heart swells with pride. My baby has an AMAZING father. How could I be sad about that!?
The bad... Sometimes Dex comes off as rude and insulting.
The good... It's never intentional, and he's quick to apologize when he finds he's hurt someone's feelings. I'm amazed at his willingness to apologize when he knows he did something wrong. (Now, when he feels his words or actions were warranted, getting an apology is like squeezing blood from a rock, and when you do get it, it's clearly not heartfelt.) 

April 13th- Daily Autism Post- Just a Thought

No, you aren't crazy. There's no 12th day post. Guess I missed that. Welcome to the reality of parenthood. I'm not perfect. ;) 

Too tired for a long autism post today so tonight you just get a short thought. I'm enjoying these posts but it makes me think about it in a more deliberate way. Aspergers doesn't consume my life. It's certainly an important part of it but it's just day to day life for us. Dex and Shawn aren't defined by it and the unique way their brains work is just our normal. I hope to share what autism is like in order to normalize it because, even with its struggles, our family has a happy kind of normal. Our normal probably just looks a little different. 💙

April 11th- Daily Autism Post- The Dreaded IEP....

Having a child with autism brings about a whole new vocabulary... Asperger's, neurotypical, 504s, ASD, stimming, SPD... and the dreaded one... IEP. An IEP is an Individualized Education Plan. It's a plan that helps a child with special needs have the accommodations they need available to them so they can be successful in the classroom. Many autism parents go into IEP's prepared for battle.
I had Dexter's today. (And I was most certainly on time because I have my stuff together and definitely had it on my calendar. *head hung in shame*) I'm one of the lucky ones though. I don't go to these meetings every year to beg, plead, scream, and fight for what Dexter needs. I sit down with a team. His team. My team. I'm surrounded by teachers and administrators who already fight this battle every day.
They come up with solutions I wouldn't even think to ask for. He has headphones, sensory swings, sound machines, alternatives for work rooms, places to be to skip school-wide activities that are too loud (like lunch, assemblies, and walking club), paras who can help him one on one, technology options. He has counselors, school psychologists, special education specialists. Last year a door was retrofitted with a window so he could have a room he could be in alone but still allowed him to be monitored for safety. He gets the extra reading help he needs, speech therapy, incentives to complete tasks he hates doing.
I feel like my job is easy. I go in and sign off on all of the options that they are already making available regardless of whether or not they've been added to the actual documentation. His needs aren't met because I have documents that say they are required to. They are met because our team does everything in their power to make it happen.
I know many parents don't have this experience. I don't take that for granted, and I'm very thankful for the education and experiences Dex has because of where we are.
I also know that teachers' time is valuable. They put in LONG days. I was raised by a teacher, and I know that after school, when they are there, they are losing time with their own families. So when you are flighty and don't write down the meeting and show up 30 minutes late, they are losing unnecessary time with their families. So, Laurie CollinsJessica RayneCarmen Kress, please tag the others who were there or pass along my sincere apologies to them as well. Know that you are so appreciated and that everything you do for Dexter is what gives him the skills and confidence to be successful and happy. Sorry doesn't give you the time back but ask I mentioned in a previous post, when we mess up, we right our wrongs and make apologies. 
So... Bad... IEP meetings can suck. Bad.
Good... Mine don't because I have awesome people. Ours are generally entertaining and almost enjoyable!

April 10th- Daily Autism Post- Personal Space Issues

Dexter is very aware of his personal space. He doesn't like being touched at all by strangers, so we've had to work on helping his comfort level with things like doctors and dentists. Now that he's older and more capable of understanding things, it's usually easier. He's also learned that if he tells them that he doesn't like to be touched and would like to have things explained before you touch him he feels more in control. Our doctors and dentist are fantastic with him.
Other things we just avoid. I do haircuts at home because it's a sensory struggle because it itches, clippers are loud, and it vibrates on his head. At least if I do it, we aren't adding a stranger to the mix.
He also isn't always a fan of being touched in general. He doesn't like it when people casually touch him... patting his back, putting a hand on his shoulder, ruffling his hair. It's just unnecessary in his mind, and it feels like a violation of his space. Every night when I tuck the kids in, I ask if he wants a hug and a kiss. Sometimes he says yes, but many nights I get a fist bump or a high five. He's not trying to tell me that he doesn't love me or that he's mad; he just doesn't feel like being touched.
Things are significantly better this year than last. Before we got his anxiety under control, he really couldn't handle being touched. People bumping into him or brushing against him in the hallway at school completely set him off.
To most people, something like a quick hug from a friend is nothing. Someone brushing your arm as they pass by is almost unnoticeable. For Dex, if he doesn't want to be hugged and you do it, he feels trapped and like his body is being violated. People knocking into him in crowded places is more than he can take.
We have a lot of easy solutions. Most obviously, if he doesn't want to be touched, don't touch him. No one, autistic or not, should have to hug someone if they don't want to. Your body, your choice. He also chooses to sit separate anytime he can. (At church, he sits in the row in front of us, so his siblings don't bump him or get in his space.) In Disney World, we rented a stroller and covered it with a blanket so he had personal space and didn't have to see the crowds. At school, he can sit away from other kids, and when he's too overwhelmed, he leaves the room, He also doesn't eat in the lunch room. Last year, his desk was in the hallway right outside the door.
Interestingly enough, he has significantly less regard for other people's personal space. If I'm doing something on my phone that interests him, he'll hover right over me or climb into my lap. His space bubble rule also has one other exception. Dogs. Tori and Alfred can always lay on him, lick his face, breath on him... He likes being crushed by Alfred and is happiest when Tori is on him. I am so thankful he has that connection.
The bad... it can be a struggle sometimes when we are in crowded places or when people don't understand how physical touch can be too much for him.
The good... there is nothing wrong with not wanting to be touched. His body, his choice. We've worked on him learning to be kind but direct about his wishes. He'll let you know if he doesn't want a hug and he'll tell doctors to let him know what they are doing, so he is aware and feels in control.
Bottom line... he should be treated no differently than anyone else in the world. If someone doesn't want to be touched, respect that. He just exercises that right more than some other people do.

April 9th- Daily Autism Post- My Failures as a Wife and Mother

I think I’ve focused some on Dexter’s failures and struggles but not so much on mine. Part of me thought about not making a post like this because it’s not pretty for me. It’s nice when the world just looks at me as a dedicated, loving, competent mother. And wife for that matter.
But my goal in this project is making people aware of what life is like. I want an honest portrayal of our reality. Part of that honesty is that I fail. I don’t know anyone else who is married to an Aspie, so I have no one to compare notes with. I don’t know their struggles or failures. But I am very aware of my own.
Before understanding or even knowing what Asperger’s was, I just thought of me as outgoing and Shawn as introverted. I just needed to bring him out of his shell. So I forged ahead doing all of the things that you are "supposed to do” in life. I wanted a house, and three kids (it wasn’t supposed to be twins!!!), friends to go on couples dates with, etc… Shawn loves me and gave me everything I wanted. We have no regrets. We wouldn’t trade our kids for anything. But I spent years pushing Shawn to be “normal” and to break out of his introversion.
Now, years later, I’ve begun to understand how overwhelming this life we’ve created is. We have a big house, four kids, dogs, people coming and going, commitments and expectations that can’t be changed. I spent years of our younger life inadvertently telling Shawn that the way he feels, the way his brain works isn’t as preferable as mine. I’m the one who fits in better. The things I want are normal. Fit in, like me. You can learn to change to fit in.
This. This is why awareness is important. It’s not about making people fit into what society “should” be. Shawn was never broken. I was never a better kind of normal than he was. I don’t know how our life would be different if we’d known then what we know now. I wouldn’t wish to go back and not have kids because I love them. And Shawn lives for them. They are both is crazy and his peace in life. But I do know I would have respected his introversion and his unique way of thinking more. I wouldn’t have gone full steam ahead just to be normal and have the life everyone dreams about feeling he’d thank me for it in the end.
So… The bad... Shawn has been dealt quite the hand. For him, it probably feels like he’s constantly holding half the deck. While he agreed to keep taking cards, I know he’s holding everything I handed him and doing so because he loves me and has always been committed to my happiness.
The good…1. Although he doesn’t always feel like it, this man juggles parenting like a master. Kids first. Asperger’s second. He will not let them suffer because he struggles. 2. I am a better parent for Dexter because of what I’ve learned through my relationship with Shawn. I won’t make those mistakes again. 3. I’ve learned how to be a better wife. I’ve learned how not to push, how to see things from his side, how to be proactive about meeting his needs and protecting his sanity. I’ve found that I don’t want him always to have to ask for help or understanding, I want to give it to him freely. Doing that has made it easier for him to ask when he does want something. 4. I love him and value him more now than the day we got married because I get to see and understand a more authentic version of himself. I don’t love him for what he could be. Just who he is. 5. And most importantly, he has lovingly, but most definitely, humbled me. I’m pushy and outgoing, but that gives me no right to steer our marriage. My personality is not better or more desirable than his. He is likely nicer, smarter, calmer, and more open-minded than I am. He is also forgiving, doesn’t place blame, and never has mentioned how things could have been different.
Autism awareness should be about letting these children grow up to be who they are in a way that validates their feelings and lets them understand themselves so they can be confident and educated in their choices. For now, Dex says he doesn’t want to get married. Whether or not it stays that way, I have no idea. But I will raise him to know that if that’s what he wants, that is completely acceptable. 

April 8th- Daily Autism Post- The Post Where I called My Kid an Assol

Ok, I'm going to be real for a minute... but maybe not politically correct so if you don't want to be offended, this post may not be for you.
There is a fine line between Asperger's and asshole. Dex can't help having Asperger's. However, he can help being an asshole. When you mess up, you apologize. I don't care if you are on the spectrum or not. You right your wrongs. This video is from last year. Dex had refused to do homework. When that happens, I want it to come home. It. Will. Get. Done. He made an apology, and we came up with a solution (that we still use!) to help prevent it from happening again. For more serious incidents, I will take him in to make apologies in person. We've clean messes from meltdowns, written apologies, taped ripped papers... This is so important. So often I'd rather shrink away and pretend something didn't happen and let it blow over, but I want him to know that's not an option. We make things right. We own up to our mistakes and are responsible for our actions. This also helps teach him why it's important for him to work to control his brain and his emotions.
The bad. He can be a beast. When I pick a battle like this, I will win because he has to be a decent human being but it may take a long time. It's frustrating and can be embarrassing. He's stubborn.
The good. He understands that his brain doesn't always cooperate, but he's also learned that his actions are his... the good and the bad. He's made huge progress in preventing meltdowns and calming down quickly when they do happen. He also has gotten good at apologizing when he's done something he knows is wrong. We've gotten here with persistence, consistency and amazing teachers and administrators who work with me as a team rather than against me. And they forgive and love him. They make Dexter feel loved even at his worst. That is key. He's not defined by his worst moments. So much thanks to Megan Dolphens Pick for weathering so much of his worst and loving him when he felt unlovable. Last year could have destroyed my son, but you didn't give up even when you probably wanted to. He came out of it stronger and more capable. I'll never be able to thank you for that. ❤️




April 7th- Daily Autism Post- His World in Pictures

Dexie has a different way of looking at things. He stops and notices things I'd never even give a passing thought to and he often asks me to stop and take pictures of things. Sometimes it's things he's done but often it's just something random. I'll caption these pictures as to why he asked me to take pictures of them. Some of them should make you chuckle. It will take me a few minutes to caption all of them.
The bad... there is none really. My phone has lots of random pics?
The good... I get to see what he thinks and how his mind is working at the moment.

Dexie has a different way of looking at things. He stops and notices things I'd never even give a passing thought to and he often asks me to stop and take pictures of things. Sometimes it's things he's done but often it's just something random. I'll caption these pictures as to why he asked me to take pictures of them. Some of them should make you chuckle. It will take me a few minutes to caption all of them.
The bad... there is none really. My phone has lots of random pics?
The good... I get to see what he thinks and how his mind is working at the moment.

I'm not sure if he made it or if Jabe did but it was on the counter and he wanted it documented.



Dex had cardboard cubes that could be folded into Minecraft blocks. He wrapped some of them with paper and made dice. He was proud of it and wanted a picture of his work.

Dexter insisted that Tori didn't like the noise so he put a pair of his noise canceling earmuffs on her. She left them on and that was proof to him that she like it and was like him.

Look. Pages can be fanned out. Take a picture! 

Ok, dude. You got it. Picture taken!

We have a lot of pictures of Alfred pooping. It started as a joke Shawn started. Now it keeps happening and Dex (and Jabe) think it's funny. Boys. 

This is a ball that popped. Dex was fascinated by it. Picture needed.

This huge leaf completely captivated him! We ended up looking up records for largest, smallest, oldest, etc. trees and leaves. This is one of 4 pictures of it that he had me take.

I told Dex I missed a hair when I cut it so I just needed to snip it. I didn't want to get clippers out for that and just wanted to use scissors. He wasn't convinced it wouldn't hurt with scissors. He asked to see what I was cutting first. In the end, he trusted me to not cut his ear off but he asked me to keep the picture for later... whatever that means.

Mind. Blown. by wrinkled fingers after a long bath. Gotta document that!

Halloween pumpkin carving didn't go as planned. For him, it was a sensory project. He liked the feeling of cutting the pumpkin. (Yes, creepyish... I know.) When he was done, he wanted a picture taken like everyone else. I'm sure making will look at this and thinks is weird or gross but I look at it and see a time Dex was willing to participate in a messy project and was able to find some enjoyment it. (Even if it wasn't exactly what I'd planned.)



"Take a picture of this bounty!" I love how he chooses words I'd never think to use. 

--He gets a small bag of M&M's at school if he has a good day. He helps me bag them. 


He was insistent that Jennifer Morrissette needed to see this dog. Not sure why but she needed it. 

April 6th- Daily Autism Post- Inverview with Dex about Food Struggles


Rather than doing a written post today, I tried something different and did a video post with Dex. He kind of rambled and wouldn't stay on track so it's longer than I'd like but he's amusing, so here you go! This is a conversation with Dex on the struggles of foods. (Also, I really hate what I look and sound like in videos.)



April 5th- Daily Autism Post- Obsessive Nature and Relationship with Dad

Aspies tend to be very focused on and very good at particular things. In my experience, tech and video games are a pretty common one. Dexter and Shawn definitely fall into this category. Tonight was a very typical night. One way that Shawn and Dex bond is Dex getting to watch Dad play. He learns a lot, they get to be together, and this is how Dex decompresses. This video makes me smile for two reasons. First, this is Dex just being Dex. He’s talking through everything. He’s Shawn’s commentator. (And bossy!) And second, this is Shawn being Shawn. This is overwhelming. Dex is loud, bossy, touching his screen, hovering in his space, and relentless in his questions. This is a one minute video but this went on for easily 30-45 minutes. However, Shawn always puts the needs of the kids before his own. Most parents do that, I think. But for him, it can be hard to handle that much stimulation. Shawn is what makes me see that Dex can have a normal life. (Ok… I wouldn’t call our family normal. That might be pushing it.) Shawn finds ways to manage his struggles and be an amazing Dad.
All of our kids adore Shawn, but especially Dexter. He knows that Dad relates to him and understands how he feels. I look at this video and see two people who love and understand each other, doing normal father and son stuff, and just being guys. Same thing as everyone else, just done in a slightly different way. That’s Asperger’s.
So…
The bad… Dexie will dominate a conversation. (Or completely ignore that someone is trying to engage in one with him.) He will remain fixated on the same subject, tell you things you already know, and continue talking to you even if you aren’t interested because sometimes he doesn’t realize you aren’t interested and sometimes, he just doesn’t care that you aren’t.
The good… He will learn EVERYTHING about a subject. His vocabulary isn’t typical of an 8 year old in the subjects he fixates on. He’ll talk about things that I have to look up or ask Shawn about because I don’t know where he gets things like CPUs, pyromancers, mods, accurate statistics on the size of blue crabs, that lightening is hotter than the sun, or how high tsunami waves are. His desire to know things has gotten stronger as he’s gotten older. I love seeing where his brain takes him and where I get to wander with it. 💙



video

April 4th- Daily Autism Post- Depression, Anxiety, and Medication

Asperger's info for the day... I often get asked if there are medications to help with Dexter's Asperger's. The simple answer is no. However, other things are commonly associated with Asperger's that can be helped with medication. Dex is also diagnosed with ADHD and general anxiety disorder. (He definitely doesn't have the hyperactivity aspect like Jabe does, though.) After two years of trying to manage things with coping mechanisms, OT, and a therapist, 2nd grade culminated in about a three-month stretch of meltdowns, outbursts, panic attacks and depressive episodes that made it impossible for Dex to function on a day to day basis, let alone be in a classroom to learn. At this point, we sought out medication options to manage his anxiety and inability to focus in order to see if we could manage his depression and outbursts.
These months were the lowest of the low. My 7-year-old told me and teachers that he didn't want to be alive anymore. For my baby to know such despair was heartbreaking. During this time, I felt trapped, physically and emotionally. I couldn't help him or make it better. I couldn't be more than 10 minutes from the school because he needed me to bring Tori in all the time to calm him. Meds made all the difference. His general anxiety level came down dramatically. This allows him to utilize coping mechanisms. He's able to verbalize his frustrations, ask for what he needs, remove himself from situations that he can't handle, or tell a teacher he is upset and ask for solutions if he doesn't know any. This, combined with medication for ADHD allows him to have the focus to not give up immediately when his school work is hard because he can push through.
So, the bad... There are periods of serious lows. Depression, anxiety, lack of focus, trial and error in finding the right meds and the right doses, not being understood... these are devastating things to deal with, especially as a child.
The good... It's not just about struggling through the lows and hoping there is good on the other side. It's finding the solutions. Medications, coping mechanisms, out of the box learning techniques, teaching him to surround himself with people who don't expect him to change who he is, learning to love his brain and finding the advantages of how his brain works... these things empower him. He is more capable of turning things around for himself. That has given him a feeling of control over his life. He will tell you when he's done somewhere and needs to go home. He can tell his teachers if he can't handle being in the classroom because it's too loud or if he's mad. He is more proactive about solving his problems than many adults I know. I know there are more struggles coming. That's life. But I'm raising a child who wants to take control of his own life. Not an Aspie who wants to do that. In this respect, he's just an empowered, kick-ass human.

April 3rd- Daily Autism Post- Learning Differently

This morning at breakfast, I had to take a book away from Dex because he was distracted by reading and needed to finish up. That's a problem that every parent is secretly happy about! With Dex, though, I am overjoyed. Learning to read was hard and very frustrating for him because he works so differently. It took me a while to understand the problem.
One day, we were trying to sound out words. M O M... he sounded it out as Jammie. I finally got it. For him, groups of letters were processed as pictures. M O M could be Jammie, Mom, Mama... H O U S E could be house, home, building. He memorized what words looked like quickly but sounding things out was practically impossible. If I gave you a series of pictures and asked you to sound them out to form a word, you'd think I'm crazy and that I was trying to trick you. That's what it was for Dex. Once we figured that out, I talked to his psychologist for suggestions, and he gave us pages of nonsensical words to sound out that wouldn't put a picture of something in his mind. We also focused on learning how sounds come together so he could learn how to basically sound out the pictures. Reading can still be frustrating because we have so many exceptions to the rules, but he gets it now. He's even learning to enjoy it because he likes to learn and know everything. So....
The bad- Seeing the world in a different way can make learning hard. Sometimes people don't even begin to understand what he sees or why he's confused. Me included. That can make conventional classrooms difficult.
The good- He's incredibly smart and capable of learning; we just have to be flexible in how he is taught.
The BEST- Dexter has had some PHENOMENAL educators who don't force him to try to learn like everyone else does. He's pushed to learn, to be his best, and to work hard but in ways that make sense to him. And he's had administrators who believe in him and go above and beyond to give him what he needs to be successful. Conventional classrooms can be hard, but because of his team of people, he's succeeding!

April 2nd- Daily Autism Post- Motivating Differently



Autism makes Dexter's brain work differently and so, I adjust my expectations accordingly. That is very evident today. Because I'm in school, my house is a bit neglected, and I count on Shawn and the kids to do a lot of the cleaning and maintenance. They do a great job, but it needs a good scrub down and a family cleaning day. (Shawn is feeling a little overwhelmed by the to-do list. Time to set homework aside and help catch up!) 
I expect all of the kids to help. Even Dex. He hates cleaning. I get that. It's not fun. But autism doesn't get you out of responsibilities. I just make it work for him. Dex needs to see progress, not look at the big picture, and have a list. He's great at picking up, loading and unloading the dishwasher, running things around the house, wiping things, organizing things, and taking care of the dogs. 
To make the day manageable, I do a couple of things. First, I add things to his list three tasks at a time. A huge list is overwhelming. I make sure they are small jobs. I'd never say, "clean your room." That's too much. He will clean his entire room, bit by bit. Same work, given differently. I also make sure there are jobs in there that he enjoys like giving the dogs treats and we build in breaks. When he's starting to get annoyed, we take a 30-minute break. He's about to take one after an hour of work. I'm happy with that. And lastly, headphones. Cleaning is loud. He hates the noise of things moving, vacuuming and carpet cleaners.
 
So today... The bad- everyday tasks that I do with ease can be very frustrating for an Aspie. His brain tells him that this job is big, pointless, and that his time would be better spent studying dog books or playing video games. 
The good- rather than fighting his brain, I try to find ways to work with it. Make this jobs rewarding and productive. And manageable.
Also, I'm not above bribery. The kid works for M&M's. Then, there is a point. I haven't had to resort to that today. However, the day is young...


April 1st- Daily Autism Post- The Ups and Downs

April is autism awareness month. Every day is about autism awareness for me! People tend to think of the struggles more than the magic that it brings. This month, I'm going to make an effort to share something every day, both good and bad, that gives you a glimpse into what life is in an Aspie family. Asperger's is an autism spectrum disorder. (ASD) With it comes sensory issues, unique ways of learning and processing information, being hyper-focused on particular things of interest, struggles with processing emotions of themselves and others, and often struggles with anxiety and depression. This is tough sometimes but it's also funny and makes our family special!
Bad- Dexter and Shawn have both had issues with anxiety and/or depression. It's something we have to watch and take seriously. There is help available and getting help has made a huge difference for them.
Good- When they get obsessed with something, we just call it an Aspie loop. We're stuck in this loop. It's incredible to see how in-depth they get on learning about something. I've learned a TON! I think this is the key to Shawn's intelligence. He will find all of the information he can on something... how the brain works, economics, computer programming languages, comics, data science, history... he loves to know.
Dex is very similar. We're very into dogs right now... world records in sizes, how their anatomy works, the location of their heart and organs, what birth looks like, how long they live, diseases they suffer from. Both Dex and Shawn teach me a lot about things I'd never even think to think about.

Monday, April 3, 2017

Autism Awareness Month- Friend or Foe

It's been a while since I've blogged because it's been a rough month with the death of a friend, taking algebra, illnesses, and trying to keep up with kids activities. I'm taking the time to write right now, though, because April is Autism Awareness Month. As with most issues, there are two sides to this movement: those who get behind it and support it wholeheartedly... Facebook is decked out, wearing blue, buying merchandise.... and those who hate it completely. Believe it or not, I fall somewhere in the middle.

How can you hate Autism Awareness you ask!?!?! Easy. The same way people become disenfranchised with awareness for any other cause. Often times, it's a lot of talk and not a lot of action. It's puzzle pieces and blue shirts but still an overwhelming lack of funding for therapies, necessary medications, and education. It's awareness profile pictures on Facebook but government regulations that do more to damage 504s, IEPs, and rights for special needs kids than help them. It's a month of talking about how we need to be accepting of others and our uniquenesses, and then May rolls around, and it's forgotten for another 11 months leaving parents struggling to fight for what they need on their own again. And for many, it's a focus on spreading awareness about autism in children while adults struggle to find any help at all and struggle with the mental health issues and social aspects of something that even many in the autism community seem to ignore.

It's people spending a lot of money on autism awareness THINGS but little on help. There are a lot of individuals on the spectrum that don't support many of the autism awareness groups because they feel that money isn't allocated correctly, that they do more to cater to families of those on the spectrum rather than those actually on the spectrum, or that they aren't accurately represented. I honestly think that all of these are valid concerns.

However, the reason I can't say that I don't support Autism Awareness Month is because I have seen how much a basic knowledge and understanding of ASDs can make a difference. Dexter's second-grade teacher was kind enough to let me into the classroom to talk to them about Asperger's. We watched an Arthur episode that explained it, and then I let them ask me all of the questions they had. We talked about how and why he gets mad, his issues with being touched, why he doesn't usually want to play with other kids. They were free to talk about everything; ask anything. His classmates understanding him makes a huge difference. Having all of our friends and family members understand him allows him to be interacted with in a way he feels comfortable and respected. He's not looked at as a ticking time bomb or treated with kid gloves because they get how to respect his feelings and his space. This makes it easier for him to just be himself.

What I want from this month isn't for people to go out and buy all of the autism awareness stuff they can find (I do kind of want a sweatshirt) or get puzzle piece tattoos to match mine (although you sure can!) What I want is for people to spread awareness that autism is something that has many sides. It's tough. But it's also funny, compassionate, educational, and complex. I want people to understand that I don't DEAL WITH my son or my husband. I don't TOLERATE that part of them and more than they tolerate my outgoing extroversion. One is not more right than the other.

Dexter is a compassionate, dog loving, M&M eating, video game playing, inquisitive 8-year-old. Shawn is an adventurous, travel loving, education seeking, comic reading, committed parent and husband. They both happen to be on the spectrum. This month is Autism Awareness Month. It's not meant to teach you to be aware of their freakish differences. It's meant to make you aware that the way you live isn't the only way to live. I love this month because you should take a minute to see that people learn differently. They want and need different kinds of relationships. It's ok to not want to be hugged or to not like loud noises. The point of this month is to remind the world that different isn't wrong. Sometimes you just have to be willing to change the way you think about something.

Look at it from their perspective... I'm going to come up to you and squeeze you, restrict your movement, and hang on you. You should like this and accept it from everyone. Even people you only see occasionally. And you do. It's called a hug. Who is the weird one now?

Sunday, February 5, 2017

I Scored an Interview with the Man Himself!!!

What is it like to have Asperger's? When Dex was first diagnosed, I asked lots of questions. I talked to doctors and therapists. I read websites and books. I talked to other parents. I sucked up all of the knowledge I could find. Honestly, though, one of the best explanations I found (Ok, my friend Catherine fount it... thanks!!!) was an episode of the kids show Arthur. If you have the time and are so inclined, it's fantastic for kids and adults!

Here's the link: https://youtu.be/iq-VhfVwqp4


However, there is one source I've never really explored. I'm almost ashamed to admit it, but I've never asked Dex what it's like to have Asperger's. We talk about it openly but mostly in the practical sense. (Aspies tend to be pretty practical anyway.) The other night, I took the time to ask Dexter some questions. Here is a brief interview with him. Things may be worded in a peculiar way, but that's because it's how Dex phrased it and he's very particular about me typing exactly what he says. He will correct me if I misrepresent his thoughts. It makes me smile. I hope this gives you a little insight into his brain and his thinking.

Mom- Your brain is a little bit different because you have Asperger's. What are things about it that aren't the same as other people?

Dex- Ok, not a little bit. A lot. I don't get excited faces as much even when I'm excited. (I was impressed that he noticed that he was less expressive with emotions than other people. I didn't know he understood that.) I also have a lot of questions when I realize something so I understand more about it. I know sometimes people are bothered by lots of questions. I like that you just YouTube when you don't know stuff and don't get mad. Like I wonder how gas burns in a car without making the car explode. I wonder how other people are acting and why they don't understand me. Well, they understand my words but who makes them act and not understand what I mean? I also wonder about things like the red line that shows up under the words when you type. You didn't spell that word wrong.

Mom- It's telling me that the grammar isn't right.

Dex- I don't like it so we made it go away. Yeah, ignore it. I'll talk how I want to talk. There.

Mom- What about how things feel or sound? How are you different from others?

Dex- I hate snow. It's cold. I don't like the feel of it. It's very hard to explain about this because I don't think other people understand. And to explain about how much I hate coldness is frustrating. I also don't like loud noises. They sound twice as much loud for me than it does for other people. I can fix it with my headphones if I have them or I need to get away from it. If I don't get away I hate the noise and I get mad.

Mom- It's different to be mad when you have Asperger's, I think.

Dex- I know. I'm sorry. It causes me to be very mad. It's hard to control my brain when I get too much mad. I've gotten good at controlling my brain now though so I don't get too much mad anymore. When I get too mad I lose my voice and I whisper. I do that so I don't explode. I don't do that too much because I'm the boss of my brain now.

Mom- What's the best and worst part of Asperger's?

Dex- I don't know! I don't know what it would be without Asperger's so I pretty much can't tell you. I don't think there is a worst part. Life is always fine to me. My brain is not a lot different from my Dad's because he has Asperger's too. Duh. I pretty much like being like my Dad. We are a lot the same. I don't want to not be like my Dad so I would not want to not have Asperger's.

Ok, I'm done. Let's play your game now!!



And just like that, our interview was cut short, and I spent the rest of my time until dinner playing Best Fiends on my phone so he could watch and help. And that's really about what it is. We talk about Asperger's. We are open and it's a good subject in our house. But it certainly doesn't define who he is. It's not the majority of my life. (Right now anyway... there are certainly times that we've been in bad places,and it's consumed every minute of my day and tormented me in my sleep at night.) Dexie is just Dexie. Another 8-year-old boy who is obsessed with video games.

What a magical thing to have a child who loves and trusts me enough to let me into his world and to try to explain his feelings. That's a frustrating thing for him to do. I'll never fully understand Dex (or Shawn) because I can't feel what they feel, but I'm so grateful that they are both willing to be patient with me while I try and while I continue to learn.


Thursday, February 2, 2017

A Peek into Our Marriage

Because I've addressed the fact that Shawn also has Asperger's I figured it might be interesting for me to answer the question that comes up most often when people know: "What's it like to be married to someone with Asperger's?"

Honestly, I can't answer that. I can tell you what it's like to be married to Shawn, but Asperger's isn't like any physical or mental health issues. There isn't a set list of symptoms or indicators. They say if you've met one person with Asperger's... you've met one person with Asperger's. And they are right. Even Shawn and Dexter have some major differences. There are generalizations that apply to many of them, but even similar issues can present differently.

So, what's it like being married to Shawn? Hard. And rewarding beyond measure.

One of the typical traits of Aspies is persistence. Shawn definitely fits that. (He'll work on a math problem for days on end without the desire to quit!) This also means that despite all of the struggles that come with being a parent, and the fact that being a father of four is even more overwhelming for him than most, HE. JUST. DOESN'T. GIVE. UP. He is present, active, and loving. When he's happy, he's there. When he's tired, he there. When he's overwhelmed by sound and chaos, he's still there. He's never decided that Asperger's makes it too hard and given up. He doesn't view taking care of the kids as my job. I've never seen someone work so hard to overcome their struggles. This man is not willing to fail his children.

It also means that we have to do things differently. Shawn needs more alone time than most. I'm very social, and I need people I love to recharge my battery. I've learned to get some of that from others. Justin and Jenny, in particular, provide me daily company and companionship. I've learned that if I ask for less quantity from Shawn, he is able to give me better quality time. It's made things easier, and I feel more loved by him. He doesn't feel constantly drained by my need to be together. He's a light sleeper and sleeps better alone. My moving, coughing, breathing, pillow fluffing... they all wake him up. We often don't sleep together because of it. I know! I know! It seems crazy! It's not how relationships are "supposed to" work. This is another way that living outside the box works for us.

I'm married to a man who actively supports my independence, pushes me to be my best, let's me think differently and be creative, embraces my quirks, is good at the things I suck at, is calm when I'm frazzled and respects our kids as people. It's awesome! Mostly.  But I'd be misleading you if I didn't explain how hard it can be.

Sometimes there is a wall built up that doesn't come down. His brain isn't wired like mine. Emotions are hard to process; both his own and mine. He doesn't figure them out by talking through it. He needs to process things on his own. Sometimes that means he's closed off. Asperger's individuals also have a higher likelihood of battling with depression. We've battled some of the lowest lows. Therapy and medications are available but because Aspie's work differently, it's often hard to find a therapist who understands them or medications that are effective. Talking about his feelings doesn't come easily, and it's often not helpful. Shawn is also incredibly smart, so he wants to know how things work, how brain works, the point of therapy and what the therapist's motives are, how meds work... In fact, just being highly intelligent is isolating because others don't relate to him.

Other things used to be hard before we knew that Asperger's existed. Obsessive loops were just weird, and I wondered why he couldn't let go of subjects. Now I've learned to embrace the loops, and I encourage them. He learns everything he can about a subject, and I end up learning from him... economics, history (we are on a Hamilton loop right now!), science, different video games, cooking... all things that he's been fascinated with at one time or another. It's been awesome for our kids too! Our family bonds over a lot of these things and we find fun projects. I also struggled with his antsiness with snuggling. Before, I took it personally and worried that he didn't want to be with me. Now I understand that it really isn't me. It's about overstimulation. I don't push so he's willing to be affectionate because he knows when he's done, there is no guilt, and I will let him go. I feel very loved knowing that he makes an effort to make me feel loved because he does snuggle.

We've learned that we are two very different people; probably almost incompatible. But we love each other so much, and he's taught me that we don't have to live the way relationships are traditionally expected to be, that we make it work. More than that; we thrive. We respect our differences and work to love the other first. We don't care how outsiders see us when they look in which is why I can write this and put it out there for the world to see. Our marriage is just that: OURS. It is healthy, stable, safe, protective, valued and unique. It's weird. And so are we.

Shawn, I highly doubt you read this blog... lots of emotions and TLDR... but I love you in ways that you'll never understand. We were just kids when we fell in love and over the last 23 years we've both grown up. We've changed. And we've let each other grow as individuals and as a couple. I often think you are the better parent and I know I'm a better person because of you. I love you just the way you are, and I am thankful that you love and trust me enough to live our lives together. Thanks for suffering through life with a neurotypical like me!

Thursday, January 19, 2017

Message to Future Jammie and Dexter...

Before my quick update and my assignment posts, when I last left off, Dexter was in a really bad place. The meltdowns were frequent, physical, and almost impossible to stop. He was struggling with a lot of anxiety, and it was having a significant impact on his ability to learn or even be in a classroom. He was just coming to grips with what his diagnosis meant and the permanence of it. He was hopeless, didn't want to be alive anymore and frankly, my anxiety and depression because of it were out of control as well.

Fast forward a couple of years to right now... things are fantastic! I know we have a long journey of ups and downs ahead of us because that's life. I'm aware that things won't always be this blissful. But the big question worth pondering is, "How did we get to here from there?" Part of the reason I want to write this is to share our story with everyone because education is critical. But I think the bigger reason for me to write this is so when we again find ourselves at the bottom and feeling hopeless, I can remember how we turned things around. Future Jammie, future Dexter... I know you are struggling and hurting, but you got through rock bottom once. You can do it again. Don't give up. Remember, you aren't alone, and these are some fantastic tools to start with...

1. Medical professionals. Jammie, you put this off way too long last time. Don't be stubborn! You have a great pediatrician, psychologists, psychiatrists, OT and PT... there is so much at your disposal. They've all seen you cry, picked you up, and then laid out a myriad of options available. Dex responded really well to the combination of these professionals, and he was barely old enough to participate. These are fantastic resources.

2. Medications. Yeah, I know. People balk. They judge you for medicating your kid. Side effects... blah blah blah... you know what? Going outside isn't an antidepressant. Dexter was seven and told you and his teachers that he didn't want to be alive anymore. Sending him outside wasn't the solution. Jammie, you and Shawn, you are smart. You research. You monitor. You ask questions. Meds are an option that can and sometimes should be used. The single best thing you did for Dex in second grade was getting him on anxiety medication. His. Life. Changed. He could control his emotions and didn't escalate from 1-100 in less than five seconds. It brought him down enough to be able to start communicating when he was starting to get frustrated. It proved to him that he had control over his brain. Sometimes meds don't work forever. Sometimes changes need to be made. Listen to yourselves. Listen to Dex. Don't let the world outside influence you.

3. Be a team with his teachers, paras, and administrators. These people were INSTRUMENTAL in turning things around for him because they believed in him. They didn't give up on him, even at his very worst. Dexie knew that Kim Lynam loved him even when his brain didn't cooperate with his heart. He trusted Carmen Kress and Megan Pick to give him options when he didn't see solutions and let him have the tools necessary to calm down, motivate himself or keep going. And you trusted all of these women to not only teach him and keep him safe but also to hold him accountable. Asperger's isn't an excuse to not do work, to be an asshole, or to not make amends when you wrong somebody. You trusted them because you worked with them and communicated your concerns and your successes with them. They didn't fail you. Be a team.

4. Get help for yourself. You know you struggle with anxiety and depression. Don't let it go without getting help. If the people you are closest to tell you that you need help, just listen. They aren't attacking you. They love you. Take breaks. You are lucky. So many special needs parents have no one they can hand their child off to, even for a few hours, to get a break. Don't be a martyr. You may want to be the one to be there for him for every meltdown, but Shawn is 100% capable. Let Dex leave the house and go hide with Jenny if he wants to. And talk to people. Keep writing. Don't force yourself into a solitude that isn't necessary.

These, and obviously a few other strategies, turned things around for Dex. We hit his struggles with everything we had. We changed routines, sought out medical and emotional help, got him in OT, and stood behind him as HE worked hard to learn how to make things better. And it did get better. New struggles will come up, and new solutions will need to be found. But, Jammie... Shawn... you've got this. You can do it. And Dexie, I love you. I love you in ways you'll never understand, and I won't ever give up. You aren't a struggle I overcome. You are a magic that I get to hold and that I'm lucky enough to get to be a part of. The fun, funny and joy far exceeds the hard. Please don't forget that.

Comm Class Learning Journal Week 5

This is another personal entry. I would guess very few people put it all out there like this... How do you fight with your partner?  We all have arguments. This week my reading was about conflict resolution. This is another area where our family (specifically Shawn and I) handle things differently than most couples. So here you go... How to fight fair with an Aspie!


Week 5- January 9, 2016

            Covering conflict resolution has been really interesting to me because my family of origin is very different than that of my husband. Being married to an Aspie also has created some interesting hurdles in conflict resolution for us. It took YEARS of learning how the other person works for us to find ways that work. Sometimes, the compromises I make are frustrating for me but doing it makes for a fairer playing field for our discussions and for finding solutions.
My family was very open about being angry or disagreeing. Shawn’s family was not. In Chapter 9, the book defined a new term for me: pseudomutuality. The book says it’s “style of anger characterizes family members who appear to be perfect and delighted with each other because no hint of discord is ever allowed to dispel their image of perfection” (Galvin, 2004). I read that to my husband, and he related because it fit his family of origin and his comfort zone in conflict resolution. His family is incredibly polite and kind. The two complete opposites we came from made for some challenging times for our marriage in the beginning.
             Having Asperger’s adds another layer of complication for conflict resolution to our marriage. It can be very difficult for Shawn to process all of my emotions and his default, when I am very angry or sad is to shut down. This is so frustrating for me. I came from a family that faces problems head on. We talk, yell, and cry, but in the end, we reach a resolution, and we love each other. Shawn just doesn’t, and likely can’t, work that way. It took years to understand this. When we are really at odds with something, I need to approach him calmly and begin by validating his feelings. If he feels attacked, he doesn’t know how to approach conflict in a reasonable way. Yelling and crying are not reasonable means of communication for him. I’ve also found that conflict resolution is much easier with him if we deal with it through writing rather than face to face. Doing this allows a lot of the overwhelming emotions (like anger, hurt, and hostility) to be tempered. We both have more time to think about what we want to say, we can wait until we are calm to deal with it, and we both get to say what we want without being interrupted by the other.
            All of this can easily be tied into the strategies for constructive conflict that are outlined in Chapter 9: Listening, fair fighting, and managing the physical environment (Galvin, 2004). Listening is key, and that’s something that can be difficult for me when I feel that I’m right. When I disagree, I sometimes cut him off before he gets to explain his thinking. Taking a deep breath and letting him walk away to the other room is hard for me but going straight to my computer to use messenger (or email if it’s not an immediate issue that needs to be resolved) allows me to say what I want and for him to say what he wants without being cut off. Since I’m not listening to respond immediately, I can read it over once or twice and actually listen to understand rather than respond.
Fair fighting is also improved for us by communicating through writing. There are times I type something and I know it’s just out of anger. I have the ability to delete it before I hit send. Once you say something out loud, the words are there. They cannot be taken back. I often find myself thinking about him sitting in the room next to me, reading what I send. I don’t want him to misinterpret what I say so I’m careful about my wording. (This is one of the downsides. Like the book says, technology takes away the nonverbal and the tones so it can be misleading. This, however, is precisely why this can be a better form of communication for an Aspie. Nonverbal, tones and body language are harder for them to pick up on and process.) I think when we write to each other we are a lot more likely to stay on topic and not get angry about words said out of anger, nasty tones or body language that serves to close each other off.
            Lastly, they discuss managing the physical environment. This was key for him. For Shawn, extreme emotion is hard to process and respond to. When he feels overloaded, his gut instinct is to shut down and leave. Over the years, I learned that following him or forcing him to stay creates an emotional wall that I can’t break through and also does long-term damage in that he became willing conflict at all cost. Knowing that he can and should walk away eliminates the feeling of him being trapped. My anger won’t follow him. He can sit in a room alone and explain his feelings to me.
            This method works for us, but it takes compassion, commitment, and an honest desire to be on equal footing rather than just a need to win an argument when working through conflict. It’s hard to let him walk away when I want to deal with it face to face. I had to learn to temper my anger/passion. He had to learn not to shut down and that even though he can walk away physically, he can’t walk away from the conflict altogether. We had to learn to love each other first, even when we were feeling angry or hurt. For me, that meant not just getting my way because I could bully him into shutting down.
            Being married is hard. Being married to an Aspie is harder. Being a mother of four is hard. Throw in a child with special needs and it the difficulties are compounded. I constantly wonder if I can be what all of my kids need. I worry that my husband doesn’t get the downtime he needs to recharge because he’s so committed to being a present and active father. Our family is not perfect by any means. But our family is probably filled with more love and compassion than most. Conflict resolution is something that is always at the forefront of our minds because we know that we have to handle it differently. We have to work harder than most to think of and take care of each other. Sometimes we fail and feelings are hurt but more often than not, my kids care for each other without being told. My husband usually feels safe in confronting me about sensitive issues and goes out of his way to make sure I get the time and space I need to dedicate time to being a full-time student. Perfect won’t happen, and we will always have to keep working at it, but I’m proud of my family because love, kindness, and compassion are easy to see. As a mother and a wife, I couldn’t ask for much more. (Now, I need to remind myself of this on the days I’m losing my mind over Aspie meltdowns, messy bedrooms, broken dishwashers and dogs throwing up on my floor because someone left the trash can open!)




References

Galvin, K. M., Bylund, C. L., & Brommel, B. J. (2004). Family Communication: Cohesion and Change. Boston: Pearson A and B.