difficulties in parenting

Interactions.

It’s been some time since I have sat here, at my computer, alone. It’s nice. Time to gather and get out many thoughts I have been having about a big subject; INTERACTION.

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Woodfield Parking Garage

IT’S TIME FOR ME TO SHUT UP. I didn’t realize how much I fill in the “empty” spaces in conversation or explain behavior when Jasan is communicating with other people. If he is having a meltdown of some sort in a store and someone that may be nearby makes eye contact with me, I whisper, “He has autism.” It makes ME feel better. Basically, I need the other person to understand that I am not a shitty parent and that’s WHY he is acting out. I blame it on the autism. I know, I know. I should’t care what anyone else thinks. But damn! That is really hard to do when it feels like you have a hundred judgmental people giving you the evil eye while your child is hitting or yelling at you; especially times when I have been on the floor trying to restrain him. That brings looks for sure.

As he is getting older, I have been more aware of my behavior when it comes to these situations. I make a point to keep this thought forefront in my mind:

“The people around me don’t matter. My son does. He needs ME and my CALM voice. He needs me to be 100% present for him in this moment.”

It’s been working very well for me. The awesome thing? It’s interesting when I keep my cool and focus how many parents walk up to me and say, “I get it. You are a great mom. Don’t worry; it will get better.” Wow. Talk about different energy attraction! When someone says kind words in a moment of stress, it takes that uncomfortable feeling away. It confirms that I am doing the right thing for my boy. What’s better than that?

Most recently, with Jasan’s elevator obsession, we have been frequenting many different buildings. I give him a time frame and let him do his thing to his heart’s content. The interaction that goes on between him and others in the elevators is fun, but also not so much at times. As happy as he is in an elevator, there is a level of anxiety that also occurs for him. He gets very wound up and on edge. It’s hard to explain. Almost as if he can’t control his excitement, but certain chime sounds or the impending “nudge mode buzz” (when the door has been open too long and an alarm sounds) scare him to death. He will cover his ears and push buttons with his elbows when he thinks nudge mode may happen. People stare at him strangely. (This type of moment is my usual cue to mouth to other people “he is autistic.”)

But guess what?

His mama is not going to be standing over his shoulder all of his life helping people understand his sometimes odd behavior. He is growing up and the “he’s a cute little guy and no one cares if something seems off” effect is slowly working it’s way out of situations. Now he may just be the strange kid.

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Ikea

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Woodfield Macy’s

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Springhill Macy’s

We have been a good team, I have to say. I am a really quick with comments to ease situations. I have surprised myself in that regard; I never thought I had that in me. He says something that makes no sense to anyone (but him and me,) and then I say something witty and people laugh. It all makes sense then. My embarrassment (which I hate to say even exists) goes away.

I don’t like saying that I am embarrassed of him (sometimes) because I totally, completely love who he is. Difference is, now I am getting used to being quiet. The buffer of opening my mouth so that other people understand the whole picture, is now gone. He doesn’t need a “team” anymore. He is 7 years old, and he must learn how to deal with people on his own. If they don’t understand and give him an off-putting look, then so be it. (He most likely won’t care in the slightest.) On the other hand, he can soak in the compliments from people who think he is the cutest “elevator man” ever. He is so polite and courteous; asking which floor that they are going to and letting them know he is pushing the door open button when they come in and go out.

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Ikea

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Ikea

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Ikea

One of the traits of autism is echolalia (repeating.) He used to copy my language before he was able to have conversations. Now he memorizes, down to every little detail and sound, the elevator videos he loves to watch on YouTube. He imitates what these guys say while we take rides. I know EXACTLY what he is talking about when he does this and I am amazed at the accuracy in which he mimics these guys! It’s crazy good.

An example…there are a lot of videos he watches off of one YouTube channel and the videographer is from Sweden (but speaks English.) In Swedish, the word “elevator” translates to “hiss.” “People” translates to “personer.” These two words are all over signs in elevators in Sweden (of course.) He will use these Swedish words when talking to people and they are very confused, obviously. Again, I am used to stepping in and explaining, but I have to stop. It is just going to be weird and that’s it. I am going to sit with it and change how I feel about it!

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Woodfield Macy’s

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Woodfield H&M

New perspective: It is going to be very interesting to see how he matures and learns how to respond/share his thoughts/information with people. As he gets older, more oddness will come forth in casual chat and he will learn to navigate. His mama is a pretty good conversationalist, so I can always give him tips on the side. 😉

I am very excited to have a growing Elevator Series of Following Jasan photography. I envision an elevator fan book down the road…

*Our favorite YouTube channel is the original, very first (of now thousands) elevator videographer. Andrew Reams, aka DieselDucy. He is a great guy that has Asperger’s syndrome (which is on the Autism Spectrum.)*

Diesel Ducy’s website YouTube channel Go give his channel a like! Why not. He has a huge following of dudes like Jasan.

 

 

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Therapeutic Day School. REALLY.

 

Us.

This post has been a long time coming. (I have been absent for a while. Re-creating my love for this blog…)

Jasan started at his new school over the summer, and is now in his first full school year there. I cannot express enough how completely IMPRESSED I am by his school.

At first I was scared. Really concerned that he would hate it and have a hard time transitioning. Of course, he was fine. (I need to give him more credit! I get freaked out more than he does about these things. I love his resilience.)

I was a little nervous, but as time went on, my emotions flipped to appreciation. Amazingly, every staff member at the school, whether they are his teacher or not, KNOWS HIS NAME. There are children from ages 6 through high school! That is a lot of people. They have a monthly parent night where we are provided support. They have gone as far as thinking about the parents and their struggles too… it’s a complete family package and that means the world!

I have realized how important these types of schools are. As I learn more and more about kids with special needs, including Jasan, it is apparent that they really do need extra support. They need to learn all the details of the way the world works down to the specific steps of socialization and just learning how to “do school.”

Neurotypical kids don’t need to learn how to accept redirection. They naturally pick that up on their own. Accepting a NO. Looking people in the eye. Having boundaries. Learning how to calm their bodies and how to label and understand their own emotions. These beautiful kids need these special and amazing teachers to be on their side and help them learn and navigate through the school years. I am so thankful that Jasan is where he NEEDS TO BE.

Details…

FOLLOWING INSTRUCTIONS

  1. Look at the person
  2. Say, “Okay.”
  3. Do the task
  4. Check back (ask “Is this what you wanted?”)

ACCEPTING FEEDBACK

  1. Look at the person
  2. Say, “Okay.”
  3. Make the correction
  4. Check back (ask “Is this what you wanted?”)

ASKING PERMISSION

  1. Look at the person
  2. Make the request
  3. Wait for an answer
  4. If granted, say “Thank you.” If not, say “Okay.”

ACCEPTING REDIRECTION

  1. Look at the person
  2. Say, “Okay.”
  3. Write the redirection
  4. Ask staff to “Please sign.”

BRINGING UP A CONCERN

  1. Ask staff for permission to bring up a concern
  2. Appropriately state your concern
  3. Accept the final decision
  4. Say, “Thank you.”

REDIRECTION CONCERN

  1. Accept the redirection
  2. Wait 5 minutes
  3. Ask staff to bring up a concern in private
  4. Accept the final decision
  5. Say, “Thank you.”

The universe has taken care of us, again. Always will.

Because my job involves working with young kids in day cares, I see a few here and there in my classes that I know need that kind of one on one support. I see autism, ADHD…just undiagnosed. I go in to different centers every day and spend short periods of time with them. I try to take extra care of those special needs kids because I know their words are different from the other children. I hope that they end up like Jasan, in schools that can offer them what they need.

This is a chapter in our journey that I am so very thankful for. I had no idea what a school with that label “Therapeutic Day School” was going to be like. I am blown away!

Jasan and Rose.

This is Jasan and his new friend Rose. They are in the same class together. I love how there is no judgement between them. They can both be their unique personalities and accept each other completely. Priceless. ❤

 

Truths & Direction.

I have been thinking a lot lately about the direction of this blog. At the beginning of this writing journey, Jasan was younger and honestly, life was easier. Posts were flowing out of me. I had more time that was non-scheduled; we spent more time together and photographing him was a daily occurrence. For those of you that follow us, it has been obvious that I don’t write as much. Why?

Well, I just don’t have time like I used to. Life has changed. We spend more time at school and work. And here is where the “truths” part comes in…

Behavior has become so difficult that it is hard to see the positive sometimes.

storm clouds

When I started Following Jasan, the goal was to help change the perspective on parenting kids with special needs. I still believe this whole-heartedly, but here I am, finding it hard to do this myself. How am I supposed to write when I am drowning over here?

In my last post, I mentioned finding my rose-colored glasses again, and throwing those babies back on. I did, but damn, they fall off a lot. That is the truth.

Dude.

I have to write this because I know I am not the only one. The most powerful moments for me lately are when I am able to connect with someone who GETS IT. I realized how much I need this, otherwise I feel EXTREMELY ALONE. So, I need to write about the hard times. I need to do this.

I am going to do my best to write more, photograph when I can (because I still feel that is a huge part of the way I tell my story) and hopefully help another parent here and there when they read and are able to exhale for a moment because they too can feel understood.

I still have the highest hopes for my son. He is extremely brilliant. At school, they tell me so. But, he is unreachable. He can’t focus. The times that he does are few and far between. Destructive actions are becoming a daily occurrence. Sometimes I just don’t know what to do anymore. He is getting bigger and stronger. Something has got to change.

He has so much potential. I KNOW he does. At home, when it is not a completely structured environment, he plays in his way. He is happy. I watch him and I know. He is able to block out the world and stay in his happy place. (Geez, I wish I could do that as easily as he can!)

But what happens when I need to go run an errand and he doesn’t want to? What if we are on a time schedule and I need to get to a doctor’s appointment but he WILL NOT get into the car? What if we go into a store but he won’t walk with me because he can’t stop focusing on the automatic doors? What if I just simply say “NO” to anything?

HELL. BREAKS. LOSE.

This is where I feel I have had patience for so many years, but now that he is older, stronger and has a will fiercer than ever, I have LOST MINE. I hate that feeling. It is a completely powerless and hopeless place. When I am running on fumes (because I don’t get the normal “me” time to recharge) it feels impossible to be the mom I want to be. My rose-colored glasses fall into the abyss. Somehow I am going to have to find the strength from somewhere to stand my ground. I feel at this point if I don’t, I am helping create a monster who will run anyone and everyone over.

I struggle with this. A lot. I know he is different from the norm. I want him to be himself and live freely to be exactly who he is, but society doesn’t. I know he has come here to be a teacher to me and others. He has changed me forever because of his autistic ways and I love him beyond any amount of words could tell you. But, when life and the “way the world works” comes into play, he doesn’t want to go with the flow. Here is the double-edged sword: I don’t want to live my life being a tyrant mother forcing him to do things, but I also don’t want to have to walk on eggshells around my own son when he is on edge so that he won’t hurt me or be destructive. How do we both be happy? How do we both flow and live in this society being who we both individually want to be? Do I have to feel like I constantly lose myself in this process? I have done that so many times because I just sacrifice for my child. I would give my life for him without question. I believe there has to be a way that we can live in harmony and be who we both want to be.

I have lots of beautiful and tender moments with him. I wake up and feel so blessed that he is with me. I love who he is. The behavior that I don’t love IS NOT WHO HE REALLY IS. The behavior issues come from the inability to communicate effectively. The sensory processing issues that deter him from being able to regulate his body. It is the will inside of him to NOT be CHANGED. Growing up, becoming more aware of his surroundings and taking in more information that he can’t always process all at once. All of these things are so huge. Sometimes I wish I could trade places with him so I could know what he is going through…

Through all of this, I am trying so very hard to remember my mantra:

EVERYTHING IS ALWAYS WORKING OUT FOR ME.

I love Jasan with such a fierceness that when times are painful, they feel unbearable. It is a love beyond any comparison. I hang on to this so tightly. I know that positivity always wins. We will get through this somehow. I am determined to thrive and I know he is too.

One of my favorite people, who I know GETS IT, took this photo of Jasan. It has to be one of my all time favorite images. It is a moment in time that completely has captured his HAPPY AMAZINGNESS.

This, my friends, is my JASAN.

Jasan

Photo taken by: Janet Kay

I declare to the world that I LOVE HIM!!!!!! There is NOTHING that I wouldn’t do to help guide his life to be a complete success.

 

 

 

 

 

Dating thoughts, Part 2.

Well, here I am…six months later after diving into Match.com and maybe a little Tinder here and there. It has been five years since I have been in a “with him everyday; part of each other’s reality” kind of relationship, and a lot has happened in life since then. For one thing I have become a COMPLETELY different person. For another, Jasan has grown up quite a bit and he communicates pretty well with me now. School is a full day occurrence; I work as close to full-time as I can since my work life pre-child…

I thought maybe it was time to be open to a romantic relationship.

I found out that it’s hard. Not that I thought it would be super easy. It is crazy how much over-thinking I was doing. What happened to the “fall madly in love blindly” feeling that you have when you are early twenties? Ha. I’m kidding when I say that, but it gets awfully  complicated when you factor age, single parent status and autism into the mix.

During first couple of dates I found myself with this weird feeling of having to explain my situation, which I hadn’t ever had to do before. I almost was embarrassed to do so. Not embarrassed of Jasan; that is not what I mean. Embarrassed that I live with my mom and stepdad because I need someone else in this world, besides me, to know my little guy inside and out. I don’t have any free time like normal adults do. I sleep with my son. He still needs me. (This is always debated; I don’t even want to go there. My mom gut says he needs it. I know him and I will know when it is time to start separating.) I only have one babysitter option for nights out (my mom: Aka, “Grammie”). She isn’t readily available, so that means I can go out one MAYBE two nights a month?

Should I keep going?

Hell, what was I thinking? Any guy that I would be talking to would think I’m not date-able. Any guy who likes to spend a lot of time together anyway. I LOVE spending quality time. That’s my deal. That is what makes me tick when it comes to romance…but I don’t have that option.

Frustration.

As time went on, I was focusing on everything about my life that sucks. I mean what really sucks. The last time I was in that funk was when I had come to know Jasan was autistic. I had to mourn. I compared. I worked with kids at the time. Oh man…I would cry on my way home from work so many times. But then, a light bulb went off.

THAT IS NOT SERVING ME OR MY SON. CHANGE THE PERSPECTIVE.

Back then, I really needed to do that to even survive. Depression would have overcome me and I would have been worthless otherwise. Here I was, left to do this alone (which I thought would be do-able…but throw autism into the mix? Damn. Didn’t have a plan for that.)

So, the positivity angel swooped my soul up and gave me a new pair of glasses to look through. Life changed. I cherished all the beautiful differences my son has that other kids did not and just accepted him for WHO HE IS. Challenges and all. A little while later I started taking photographs of his “oddities” which I loved. I gained some momentum and Hello! to this project. Following Jasan was born and I started budding creatively, which I had not done in many years. I started learning more about myself, which basically is what parenting is all about. (Ha. Not what you expect pre-kid, at least your first one anyway.)

I was okay with not having a partner. I didn’t have time to focus on anything else but Jasan and me and figuring out life with autism. I dabbled in a long distance connection when he was younger, but in the end, we didn’t live in each other’s reality. That is not what I wanted. So, single was to be my status.

It took some getting used to, but after a while I didn’t miss it. I didn’t miss the male affection I was accustomed to receiving. In a weird way, I was thankful for this. I know being single and working on ME was something that I needed to do for a long time. It was something that life (circumstantially) forced me into, but it changed me none-the-less.

Fast forward to now, and here I am…back in the funk. I loathe the funk. It scares me, as someone who has dealt with depression since my childhood years. I realized though, it’s okay to want to do things. I miss out on a lot. DATING, soooooo many girlfriend hang outs, going to the movies, going out for drinks, doing anything adult, picking where I want to go to eat vs. where Jasan will eat, photography shoots with my friends, just taking time to learn stuff! Classes, whatever! Simple things like going to the store by myself. Shopping, being spontaneous, traveling, visiting my brother in Arizona… SO. MANY. THINGS. Even when we did finally get to go to Arizona this past Thanksgiving, I STILL MISSED OUT ON STUFF. Sometimes I just feel a big WTF.

But, here I am again. Time to change the perspective. During a really great discussion with my awesome boss, he suggested I listen to a specific podcast: an amazing story of one individual’s strength…and what stood out to me was: are you a VICTIM or a VICTOR?

I have lived the victim card now for some months. I am so done. I don’t like these glasses…I want my victor ones back.

I found them in an old drawer today. Cleaned em’ up and they are ready to wear.

I love my son more than ever. I am excited about our future. I am excited about the day we had today. We have some cool new things and are getting reorganized and that FEELS GOOD.

I am done focusing on LACK, because my life is full of beauty. It may not be your “typical” beauty, but it’s mine, it’s what surrounds me and I will cherish it.

This is a pretty vulnerable post. I wrote it for all the other parents who are held captive by their kid’s special needs. It’s great if you have a wonderful partner to help, but sometimes partners are no help either. Partner or no partner, it can feel EXTREMELY LONELY.

If you have felt this, it is possible to turn it around. Quit looking at what you hate and look at what you love.

The universe will deliver a very different experience to you. It has happened to me before and I know it will again. Try it.

snuggles

He is my favorite snuggle partner. I am helping him to learn how secure he is, because he can feel the love from his mama. That is life-giving to me. ❤