Following Jasan

Year 13…

By 10 Comments

Hello all! It’s been many years of being MIA from this wonderful method of communicating, but it’s time to come back. I can’t think of a better time to start. We are now embarking on the teenage chapter of life!

My love for writing has been dormant for a very long time.  It feels good to sit with my computer in my lap and let my thoughts flow. So much life has been lived and many changes have happened since I have last been here! I have decided to wake up my love of sharing our story. This is a wonderful creative outlet for me, but the overall intention has always been to connect with others out there that have loved ones in their lives whose brains may function different than whatever the f@#k “normal” is supposed to be in society.

I will be eternally grateful for my son coming in to my life experience. My mind’s view of the world has been broadened in so many ways. Thirteen years ago he flipped on a light switch in me. It has been a journey, but I am in a place where I do my best to learn and dive into a loving, accepting place for everyone I come across. I honestly don’t think I would have become the person I am today without him. (I could write a whole post on just that subject!)

It’s kind of funny…it seemed that during his actual birthday week, his attitude started to change. As I giggled to myself realizing that I definitely have a teenager now, I noticed right away that there will be a whole different set of challenges. I am sure that every parent feels that. The tricky part for me is that our situation is a bit different.

I hate comparisons, but sometimes they are necessary to make assessments. A very good friend of mine has twin boys that are 6 months older than Jasan. Occasionally we all get together and I watch her boys interact with the world. As our boys have grown, the differences have become more significant. Physical development obviously, same.

Mentally, very unalike. Not better or worse, just dissimilar. As you may guess, knowing what most of the world recognizes about autistic traits, reading social cues and interactions with peers run on different parallels. Neurotypical people have learned facial expressions and body language by default. Neurodiverse individuals struggle more in that regard, which I would assume makes living life in this society very effortful.

I have read many articles written by those on the autism spectrum that talk about masking. Masking would be defined as the act of hiding one’s autism related behaviors, as well as displaying socially expected behaviors, to fit in. It has also been explained that the process of masking involves applying social skills MANUALLY rather than UNCONSCIOUSLY. It requires constant focus, and effort.

That. Sounds. Exhausting.

It also seems unfair.

At this point, I don’t think that Jasan is experiencing this at a substantial level (yet.) He still does his own thing when I am with him; stimming the way that he does. At home he skips around the room, scripting videos from YouTube that are present in his mind at that moment. He always has his laminated pictures nearby (of whatever his interest is at the current time.) I have always presumed that those pictures are a comfort item. He literally has a few with him at ALL TIMES. His little pile will follow him around the house, and when he leaves for school he has a few in his hand and the rest that are meaningful that day go in his backpack.

At school they all remain in his backpack. That is the rule. This is probably helpful so he realizes he can function without them, because in his adult life that would be weird to walk around with laminated photos in his hands. (See? Right there. A form of masking that may occur. Having to act like the majority of the world and doing what everyone else does. In turn, he excludes a comfort item. Now, the comfort item may change and become something that doesn’t appear “odd” in society. But the point is, masking. An example of how it sucks.)

When we are in public, he has his iPad or phone in his hands. He has started to carry a bag or backpack wherever we go with his pictures inside. He is my budding photographer (yesterday we discovered that he has 34,000 photos in his phone right now!) but what he loves to take pictures of is entirely his own niche, and I absolutely love that about him. The reason I mention this is because when he is in action, I am SURE people are wondering why he is taking the pictures that he does.

 

 

 

 

 

 

Right now the main subject of interest is cars. He knows *almost* (but feels like everything) about models of cars and their aesthetics. His car photos always target the rear end of the vehicle. He also likes to focus on the license plates themselves.

(Photos by Jasan)

So, you can imagine when we roll by a car that catches his eye in a parking lot and he jumps out to take a pic, people wonder WTF? We have even had to deal with some questioning why… or we just wait until people leave the area. (The easiest way, lol.)

We were at Woodfield Mall the other day and he noticed the address numbers on the bottom of the store windows. He crouched down and took a picture of each number as we walked past.

 

I had good friend participate in a craft show recently, and it was held in a large high school gym. Jasan’s eyes immediately took flight to the huge scoreboards with LED numbers and of course, he was totally all over that! Through the sea of people he made his way to each end of the gym and positioned himself, very obviously, to align himself with the best close up shot.

(Photos and edits by Jasan)

I stood behind him and noticed a few women nearby watching and questioning what he was doing. I usually look at inquisitive people and smile. It deflates the moment, of which Jasan doesn’t even recognize, but also makes me feel better. And hopefully, opens the mind of those that see him as strange.

(Photo by Jasan)
(Photo by Jasan)
(Photo by Jasan)
(Photo by Jasan)

Don’t judge. Just accept all humans for who they are. Instead of situations being weird, why can’t we as a society start to think, “Cool! What is that guy doing? Must be something interesting…”

(Photo by Jasan)

Coming back around to social development, 13 year old autistic, neurodiverse Jasan compared to most 13 year old neurotypical kids is wildly obvious to me. The interests and conversations are distinctively different.

Having a group of buddies and talking about girls, playing team sports and starting to notice development of social circles in school is how I see the neurotypical 13 year old boys around me. Jasan, on the other hand, does not have a friend group outside of school. I highly doubt that he interacts with the kids in his class as if they are personal friends; he most likely just exists on his own in the same room with them all day.

He doesn’t like sports. He likes his school, but because all of the kids that attend are autistic, he is not experiencing diverse social groupings. That doesn’t exist there. There has not, even for a blip of a moment, been any mention of being attracted to another person in a teenage romantic sort of way. (THANK GOODNESS. I haven’t even began to wrap my head around that stage of life yet.)

Jasan currently seems to be happy in OUR bubble. Still hanging out with his mama and going on our version of adventures, or just hanging out each doing our own thing but in the same space. On dad’s days off, we have family days and he doesn’t want to stray from that yet…

He still finds joy in skipping in front of the house pushing the hand truck/dolly just like he did when he was a little guy. There are many little routines that continue to hang around that seem juvenile, but I envision his play on imagination during these times to be highly evolved. He doesn’t need anyone to walk along with him; he is happy in his own private moments of the movie he is acting out in his mind.

Now… I’m not going to lie. As I write this, I realize how selfish it is for me to want to hang onto this phase where he is cool just being with me. But, inevitably it will change, and I know that will feel weird. Sad in a way, but in the same breath, I always feel elated when he evolves. I feel unconventional in regards to parents who make mournful comments about their kids growing up. In my situation, these are exciting times. That excitement trumps the loss of the kid stage, every time.

The phrase “stay in the present” that we all hear often is my focus these days. I want to make a practice to keep it that way. Time is not slowing down. Independence is a wonderful thing that I am excited for him to embrace. I don’t want to miss a thing!

I think I’ll end this post here. There is a lot more to talk about as time goes on…

Thanks for spending a few minutes here with me.

Conscious Parenting.

By 7 Comments

I have been thinking a lot lately about the impact of what I say. This applies all the time; when talking to anyone. As Jasan gets older, I realize how influential I am to him specifically. It feels like a huge responsibility. I don’t want to screw him up. At the same time, what an honor! There is a little human on this planet that lives and swears by mostly everything I say. I guess I am quite important. 🙂

This really came to mind on a morning when Jasan came to my bed after he woke up. (He is my alarm clock on non-alarm clock days!) We had a little family argument the night before, and he was very concerned about it. He shed a few tears and just really wanted everything to be ok. I told him, as I was putting him to bed that evening, “Everything will always be ok. Let’s just all sleep and we will feel better in the morning.”

The first thing he said to me as he climbed into my bed that morning was, “Mama, I don’t want to be mean. I want to be a good guy. I feel much better. Are you ok now?” Which I replied, “Yes. I am ok! And just so you know, you are NEVER a bad guy. We all can have bad moments, but you are not a bad person. EVER.”

We laid there in silence, all snuggly, and I thought about how sweet that was. He really absorbed what I said and verbalized it back to me. Umprompted and on his own. WOW! He is growing up. This type of interaction would not have happened last year.

I read this recently, “Give your child the benefit of the doubt when their behavior seems unwarranted. Their immaturity leads them to perceive and respond to the world around them much differently than you.”

THIS COULD NOT BE MORE TRUE; with all children, but especially with our autistic kids.

Some more goodies from  this article:

How we learn to respond or react to life is driven by our interactions with others. And the patterns which are set up in early childhood form the basis of our future relationships – including the one we have with ourselves.

As we mature, we collect, sort, and file away our emotional experiences as reference points. 

A foundation of self-regulation, resiliency, and attachment is built – memory after memory – shaping our perspective, beliefs, self-concept, and outlook.

Everything can be completely changed – mood, behaviors, emotional intelligence, the ability to give and receive empathy, cognitive processing, and even our immune function, by altering how we experience our primary relationships and close attachments.

Choose to give your child quality feedback about how to respond to the world. 

Conscious parenting deepens your child’s trust in the world and secures your influence as something to be regarded as safe and reliable. This cultivates the environment your child needs to develop and thrive – mentally, physically, and emotionally.

Fill the hearts and minds of your children with acceptance, understanding, and confidence. Try these three conscious parenting tips to start building a more influential relationship with your child.

CHECK YOUR LANGUAGE – is it harsh, sarcastic, cruel, degrading, impatient, insensitive, or otherwise disconnecting in tone or attitude – verbally or nonverbally, or is it kind, respectful, encouraging, and confident?

CHECK YOUR EXPECTATIONS – is your request developmentally appropriate? How can you help your child? Can you control the environment to meet your needs w/out your child’s help?

CHECK YOUR SELF-REGULATION – is your manner calm and confident? Are your limits set with kindness regardless of how your child reacts? Can you remain composed and non-argumentative even when your child is not?

Here are a few more points to consider:

13 PRINCIPLES OF CONSCIOUS PARENTING

(by Alfie Kohn)

  1. Be reflective.
  2. Reconsider your requests.
  3. Stay focused on your long-term goals.
  4. Put your relationship first.
  5. Change how you see, not just how you act.
  6. R-E-S-P-E-C-T.
  7. Be authentic.
  8. Talk less, ask more.
  9. Be mindful of your child’s age.
  10. Attribute to children the best possible motive consistent with the facts.
  11. Don’t stick to no’s unnecessarily.
  12. Don’t be rigid.
  13. Don’t be in a hurry.

I have discovered many things about myself since becoming a mom, and I have to say, one of the most important for me is DON’T BE IN A HURRY. Jasan (and I assume most autistic children) do not handle transitions easily. He is learning as he grows how to cope, but it has been key for me to HAVE PATIENCE. If I rush the process, it makes the whole experience a million times worse.

I like to think of conscious parenting as really learning my child and responding appropriately to what he needs. It requires looking a little deeper and taking more time. It is also a process of going more within myself and changing my default habits. Default is not better.

Interpretation of the senses…

By 7 Comments

How often do you overthink things? Do you find it exhausting or empowering? I am not sure if “overthink” is even the right word to explain what I mean…

Having a relationship with someone who experiences the five senses much differently can be tricky, but also such a learning experience. The older Jasan gets, the more I can pinpoint where his focus is. When we spend time together, there is something to be observed in each interaction. I like to think of this process as diving deep into my connection with him and this foundation will benefit him greatly in his adult relationships.

Sound. He is a big fan of playing iPad games together. I have noticed that he pays so much attention to the audio of the game, almost more than following the rules. He repeats the sounds perfectly (it’s INCREDIBLE!) I have also noticed that his absorption of sound is stored in his CRAZY AMAZING memory. He remembers tones of specific things from so long ago; it’s mind-blowing!

Sometimes I tune him out (which I hate to admit.) It would be impossible to pay attention 100% (like with anything) because the majority of what he spends his time doing is scripting things he has memorized.

Definition: Scripting is the repetition of words, phrases, intonation, or sounds of the speech of others, sometimes taken from movies, but also sometimes taken from other sources such as favorite YouTube videos or something someone else has said.

Because I spend so much time with him, I usually know what he is scripting. If I don’t recognize it, I sometimes ask so that I can get into his world and try to keep him somewhat in mine. I feel like this is another part of deepening the connection. I want him to realize that a fun part of life is interacting with others. I know he loves to be in his own head and he finds comfort in that, but he also needs to tune in to what’s happening around him.

Wash vibrations and sound

Another side to this is that he has shown to be afraid of loud sound. Sometimes he can handle it, sometimes he can’t. Is he expecting the sound or did the sound occur unexpected? How loud does the blender sound to him? If someone raises their voice, does he feel agitated because of what they are saying or how loud the words are being said? What is he focusing on when he listens to a movie or video? When walking into a large crowd of people, what stands out to him? Does he zone in on one sound or are all sounds too much and are overwhelming?

This is where the parental “overthinking” occurs for me. I like to consider all things when determining how to respond to a certain behavior. I don’t see this as a bad thing, I see this as a “mom strength.” I feel having an autistic son has forced me to explore as many possible perspectives because of his different way of seeing the world.

Touch. Don’t even get me started. 🙂 No jeans, no scratchy tags. Only ankle socks. No tie shoes, only shoes that can slip on and off, like crocs or sandals. He loves cuddling. People that he is very comfortable with he has his own way of being touchy feely. I know physical touch is very important to him. But, when he has had enough, he will let you know. ha. He loves water, swimming pools, sand and sunshine. He HATES getting his hair cut and going to the dentist. (Like H A T E S with a passion.) He sleeps completely underneath his blanket, all cozy like a snug bug in a rug.

 

Taste. Oh my. Well, as of now he has a palate for about four things and two drinks. Chicken nuggets, French fries, Home Run Inn cheese pizza with thin crust, and kettle potato chips. Water and unsweetened iced tea, NO LEMON. I have told him time and time again that he is missing out on so many amazing flavors! This subject is a big one for me because I want to feed my child healthy food!! As you can see, his diet is horrible. I am sure that certain textures have to do with the behavior that he has now concretely developed for not even being willing to try new foods. If it looks different, he knows the brand is not the same, pizza slices are cut the wrong way, it’s too well done or not done enough, the list goes on…he won’t eat it. I say a little prayer for the experimental food vibes to hit him at some point. 🙂

I buy them ALL! Always clearing them out. Pizza jackpot!

Sight. His eyes always zoom right to the objects he is interested in. I see in the photos he takes. It’s so interesting what he concentrates on! It is so different from me. This is another aspect of the senses that has surprised me with Jasan. He is so eclectic. I love it! He knows what he likes, ever since baby age. I remember his crawling towards a computer versus a toy on the ground. Not. Even. Kidding. I have it on video!

Below are some of Jasan’s photographs. This is what he sees and thinks is picture worthy.

Smell. I haven’t noticed him to be super sensitive to smell, which surprises me. I mean, on occasion, yes, but on a regular basis he doesn’t mention any aversions or talk about scents he likes. Lately, he has been asking to smell what other family members are eating. I hope this helps him turn a corner with his eating habits! We’ll see.

It’s a complicated life, but hey. We are all complicated! I am having fun figuring him out.

 

I’ll leave you all with this. If you have an autistic child, you know this is true!

?

 

Claw Machine Madness

By 25 Comments

One of the things that I find fascinating about Jasan is what he ends up watching on YouTube. He has studied a million washing machines and agitators, hospital equipment, IV’s and medication, all about app ad revenue, vending machines, bill acceptors on vending machines, kids dumpster diving for electronics (oh my…) SO MANY ELEVATORS, elevator parts, elevator animations, getting stuck in elevators, keypad deadbolts, research on cell phones of ALL KINDS, computers (obviously,) how to program thermostats, cash registers, hotel tours, computer logos, LED signs, electronic fails, screensavers, Zach King magic, windows software videos, Microsoft blue screens of death, fire alarms and exit signs, golf cart racing, iPods, appliance unboxing videos, the science max guy, getting scammed on eBay, cell phone battery low alert tones, weather radios, tornado warnings, baby monitors, Lutron lighting switches, refrigerators, dishwashers… and all of this is just compiled from looking through the last 6 months of his YouTube history! Interestingly enough, arcade games made the list. He has been watching these two channels (Arcade Warrior and Arcade Matt) and they video themselves playing all the games and winning tickets at arcades near them. The claw machine is a big one.

The fascination with the claw machine surprised me for some reason. I guess I have never thought much about them and haven’t been a big arcade person myself. But let me tell you; you can find people in the world that are obsessed with anything and everything. Claw machines are major.

I love how he studies the claw from all angles, just like the guys in the videos. Because he is the master of memorization, scripting while playing is always a must.

(Scripting is a form of stimming. By definition: “Stimming is behavior consisting of repetitive actions or movements of a type that may be displayed by people with developmental disorders, most typically autistic spectrum disorders; self-stimulation. A coping mechanism.” I like to describe it as the INCREDIBLE ABILITY to sound EXACTLY like someone or something you have heard before. And, maybe it just makes him feel good!)

I wish he could meet these YouTube guys sometimes. They would be amazed at the knowledge he has of every little move they have made and words they have said in their videos. It’s absolutely mind-blowing.

If it makes my guy happy to take a five bucks to the quarter machine (another highlight) and get a handful of coins to practice his claw skills, I say, “Let’s find more arcades!”

WINNER!

 

 

 

Then there are the home versions…

A few videos for you… Jasan took the last one. Now that he is a bit older, he takes his own photos and videos ALL. THE. TIME. I love it. It’s cool seeing his perspective.

Thanks for reading! More obsessions soon!

 

New little family.

By 22 Comments

2020 is here! I have a great feeling that this is going to be the best year yet.

2019 was a pretty big deal, too. I got married in May. I honestly never thought I would get married. Being the age that I am (42) and living the amount of life that I have so far, I kinda just decided that I would be okay with just a long term relationship; a life partner without the need for a piece of paper. Or, even just stay single until Jasan aged. Years were extra rough when he was a little guy, and dating was near impossible.

Prior to becoming a mom, I was always in a romantic relationship. I didn’t REALLY know how it felt to be an adult and be alone. So, as you could imagine, once Jasan arrived and I realized life was not going to be what I “expected” once the diagnosis of autism appeared, I was forced to experience the single life. I now know that it was the best thing that could have ever happened to me, and extremely necessary.

It was time in life to focus on my son, which also forced me to look at myself. I knew nothing about autism then, but I do know that Jasan was meant to be my child. He is perfect for me. Jasan had to be number one. He has taught me what love really means. Being the parent of an autistic child in a neurotypical world takes some getting used to. Lots of lessons to learn. It feels like lots of battles to fight at the beginning, but I was able to move on from my negative way of looking at my day to day and see the good things. The older he gets, the more my passion grows for neurotypicals to try to understand people who are different from them. As much as I want the world to be perfect and accepting of Jasan, I know that will not always be the case.

When Jasan grew beyond toddler years, life began to change a little bit. I was never able to call a babysitter and go out to have time on my own, but Jasan would be able to stay with my mom (aka Grammie) for periods of time and even go through the bedtime routine with her. It gave me a little bit of flexibility to go do some “adulting,” occasionally. Funny enough, Evaristo (my husband) and I connected through Facebook. I would have never guessed I would meet my husband there, but hey. The times of social media!

We decided to meet for dinner and the minute he walked in the restaurant and started walking towards my table, I knew something was different. Number one, first impression, MAJOR attraction. He was just as hot as his picture. And his smile!!! O M G. Once we started a conversation, I was intrigued. There was a spark of a different nature. That was the beginning!

Of course it would need to be the right connection between the THREE of us. That was the tricky part. But to my surprise, Evaristo was able to understand Jasan’s complexity very quickly. He was quite intuitive about him, which was a huge comfort to me, and a VERY GOOD sign. I had been scared for so long if I would ever find someone who would be able to understand the dynamic between Jasan and me. It’s deep and different. The way I parent is different, and it needs to be. I don’t have a typical child.

Not to mention, would it really be possible for another man to love my child as much as I do? Evaristo just blended into our situation with ease. So, after awhile of dating and trying to spend as much time as we could together within our busy lives, he asked me. On Christmas Eve 2018, we got engaged! I just knew it would be right. I’ve never felt that before.

Fast forward to May 25, 2019, and we had a beautiful wedding at my parent’s home. Small, simple and elegant.

As you know, with any blended family situation there are road bumps. We have had them, and will continue to, but I always feel confident that no matter what, we’ll persevere. Every time.

I write this post as an introduction to year 2020, but also as a new start to this blog. I felt as if this project came to an end years ago, but I can’t help but want to share everything as it is now. Growing up, new family dynamic, new year, new ideas. Time to start again!
My reason for writing has always been to be relatable. I feel that if I had stumbled upon something of this nature when I first found out autism was going to be a part of my life, these kinds of stories would have opened my eyes to another perspective. And oh my goodness, did I NEED that then! I strive to get the word out that autism is beautiful. It does not have to be looked at as a burden or a “disorder.” It is just a different way of life that is complex and extremely interesting.

I will never claim to have all the answers, but I know I can share my experience as a mom living in a life surrounded by autism. It’s the best thing that could have ever happened in my life. It changed the trajectory completely and in the BEST way.

I am so excited about my new website…many thanks to Monty Winters for his artistic vision and time. I am so grateful.

Hello again! It’s been a minute…

By 23 Comments

Jasan, now age 9.
Photographer: Emily Sara

I think it’s time to write again. Life has changed; in the BEST way.

It’s time to share the journey as the dynamic changes.

It has been a few years since I have written. A lot has happened during that time. Man, Jasan has grown! His brain is a whole different story now. 
Instead of being just the two of us, it is now the three of us. (Marriage happened!) Actually, it is 4 of us. Otis, our dog, counts too. 😉

Christmas card 2018 photo shoot at Menards. I know; strange location for a Christmas card, but…Jasan is still obsessed with appliances! It fits our family.
Photographer: Emily Sara
Christmas card 2018 photo shoot in the old apartment.
Photographer: Emily Sara
Yes, we have a shopping cart at home. Jasan found it by the dumpster in the parking lot of our old apartment and HAD TO HAVE IT. lol..
Christmas card 2018 photo shoot.
Photographer: Emily Sara
New love.
Photographer: Emily Sara

I am looking forward to being inspired and sharing experiences again. Being a mom of a growing autistic kid has been so challenging, but also SO REWARDING.

I’ll be filling you in!

Welcome back…

The Power of LOVE.

By 6 Comments

My mind is reeling with thoughts. I am awestruck at a radio talk that I just listened to.   [http://www.radiolab.org/story/diy/ : Second half]

Stories, from parents of children with autism, who have seen the most amazing breakthroughs. You know why?

Because they LOVED so much that they figured out how to get into their child’s world. Like REALLY figured it out. I thought I had a lot of this autism thing worked out in my mind; in regard to my son anyway. I have a whole other level of understanding as of today.

We make sacrifices for our kids. We just do! Even if you only care about your kid a little bit. 😉 (Ha.) It is part of being a parent. Our lives turn into a different existence, not just an individual one, but a life that revolves around another human in the hugest way possible. Being a great parent creates ENORMOUS shoes to fill.

Throw a little one into your life, that you have indescribable love for, but…you can’t connect. You can’t reach inside their world. It is the most devastatingly horrible feeling ever. To hear that your child has any sort of “diagnosis” pretty much sucks. There are all the different stages that, as parents of special needs kids, we experience. Disbelief, denial, sadness, loss… and if you can make it to the other side, there can be so much HOPE.

Strings of hope that lead to FIREWORKS when words are spoken…eye contact is made…physical touch is expressed. When you finally, after years of waiting and giving everything you’ve got, see a glimmer of a personality that you overwhelmingly long to connect with. Even if for one minute. It makes every second of every sacrifice worth it. If you keep riding the wave of hope, more fireworks, even if it takes a while, even if it’s just a firecracker, can come along.

Jasan age 2

I think the reason I feel so amazing is that I feel validated after listening to the radio link above . I feel like a really good parent. I feel like I am COMPLETELY doing the right thing for what my son needs. I see him changing. I see him turning into an amazing little boy who is quite the charmer with a HUGE heart. He is like that because I have loved him so incredibly much and found him in his world. I have stayed in his world long enough (and still do) that he is blossoming.

One of the most common phrases you will hear about autism is that, “When you meet a person with autism, you have met one person with autism.” No one is the same. My story is not going be your story. My triumphs with my autistic child is not going to be the same as someone else’s.

The parents who have hope and dive inside find that sparkle. They know what color their fireworks are.

Jasan age 7

Recent Posts

Recent Posts

Archives

Meta