mother son

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?

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Jasan has been going to the same public school since the age of three. He is now six. For the past two years he has been in the autistic program within the public school.

In the last IEP meeting we had, the team that works with him felt that some of Jasan’s behaviors were beyond what they were able to deal with. Destructive behavior without any reasonable or predictable antecedent. This is different from the year before and they feel like they are at a loss, therefore, the suggestion was made for him to be transferred to a therapeutic day school where they work with kids that are in a similar situation.

I was not averse to that recommendation. I want whatever is best for my son. I will do whatever it takes without hesitation. So, we (my mom and I) checked out the schools that they recommended and decided on the one that felt like it would be the best for him.

After the first visit, I was not expecting the emotions that arose within me. I was crying the whole way to work after our morning tour of the first school. Why was I feeling sad? Was I scared for him? Is this another feeling of loss to experience of a mom of an autistic child? He can’t make it in public school?

Probably all of the above, but I thought I was stronger than that. I thought, especially knowing the way I reacted to the idea from the team to send him elsewhere, that I was cool with it. NO big deal. It would be better for him.

During the second school tour, I felt good. In comparison to the first tour, this school kicked ass. I liked how the principal presented their mission and how he described the way the try to really understand why kids have the behaviors that they do. Actually getting to the root of the issues. Again, when I left, that strange wave of sadness took me down.

I have vivid memories of separation anxiety with my mom. BIG TIME. Almost debilitating to me. It was a horrible feeling that I wouldn’t wish on anyone, and I can see some of that in Jasan. I see a lot of similarities between him and me. Parts of little Heidi; emotional behaviors in my childhood that give me anxiety just thinking back that far. Gut wrenching feelings. In all honesty, that scares me.

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I don’t think that he fully understands that he will be going to a new school in a month. We visited the new school (which upset him very much because our morning was out of routine) and once we got there, he seemed okay. Timid, but going with the flow.

In my mind, I was sad for him the night before. I was explaining what the morning would look like. The tears and the begging “I just to stay at (his current school)” was making my heart hurt. I don’t think I have ever loved so much to where my heart literally feels like it is being crushed to bits when he is sad. The thought of this transition and his discomfort is pretty paralyzing to me right now. I did not expect these feelings at all.

I get sick to my stomach and angry sometimes when I hear parents that have kids (that transition with no issues) say, “Kids are resilient. He will adjust fine.” I have no doubt that eventually he will be in a new routine and all be will okay. But, the transition may be something that creates distress inside that he may NOT forget. That happened to me. I didn’t forget, and it made a difference in my life in some respects.

I realize I cannot control every aspect of his life. I cannot save him from pain; from sadness. Again, having a child is such a lesson in life. Oh, letting go of control. That is  hard one, especially when it has to do with what he is exposed to out of my sight. He is the love of my life and the closest person to my heart. Autism…ugh. He doesn’t tell me what happens play by play at school or when we aren’t together. He doesn’t share much at all. I am not sure he can yet. That is always something that I have struggled with. It’s really tough.

Today, after the visit to the day school with Jasan was rough for me. I don’t like the idea of him being so far from my office every day. Right now his current school is 7 minutes from me. Sometimes I think I have separation anxiety with him; there are days when I long to see him and can’t wait to be with him again. ❤

This is a lot to take in. For him, once he starts making the change. For me, taking in all of this new information and watching him go through this move. He needs to go to a special school and that is okay. It is not what I envisioned for him, but again I have to change the expectations in my mind.

Why is it so hard to just not have expectations? It is impossible.

I want him to be successful. I want him to be able to hold a job and be independent. Ii hope he is a scientist or a sound engineer…whatever his dream ends up to be. I want him to thrive in this life. I hope he finds the perfect woman who understands him like I do and that they are able to have a love that is beyond measure within a fulfilling relationship.

These are expectations I have for his adulthood because I love him so much.

If life takes a detour to get him there, then I guess so be it. This is my lesson to go with the flow and let go of my childhood memories of anxiety. At least I know how to spot it and can hopefully help buffer it for him. The feelings of anxiety and sadness are going to come up for me in the days ahead. I will try to keep my thoughts positive, but I need to get my feelings out as well.

I want him to FOREVER know how much my heart LONGS for him, and to know I could inhale him I love him so much. 🙂

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Just talk to me…

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It seems to me that within the past week, Jasan’s language is becoming more conversational.

THIS. IS. BEYOND. EXCITING!!!

I have waited 6 1/2 years for these moments. 6 1/2 years.

It’s really happening!

Tonight, after lights were out, we laid in bed and just talked. I have been trying to come up with some more adventures (new experiences for him) for us to do together, and camping came to mind. (I am SO not a camper, but I’ll try anything for him.) I suggested in the summer we could do something like that if he is interested. We literally had a whole conversation, where he was coming up with ideas and asking me questions, and we have a tentative plan.

  1. Do research on the perfect tent to buy. (Jasan and Mama size of course.)
  2. Buy a book and watch videos on YouTube about camping.
  3. Buy the tent in June.
  4. Learn how to put the tent together.
  5. Practice “camping” under our bedroom glow in the dark ceiling stars. (LOL.)
  6. Give it a go outside on the backyard deck one time.
  7. In July, pick a campground. Go check it out and visualize the experience. Make a list of things we would need/do.
  8. Camp for real. I hope I can make a fire.

(Did I just really write all of that? ❤ Total elation.)

And guess what the last thing he said to me before falling asleep was?

I LOVE YOU MAMA.

Eighth time I have heard that unprompted. That is few and far between in his life so far, but each one of those eight times my heart has been filled so full it makes EVERYTHING; the impossible times when I want to give up, and the billion times I have said those words to him with no response ALL WORTH IT.

little jasan

little jasan

little jasan

I have been in a very down period lately. Most of my friends don’t even know. The reason I say this is because my boy, who is totally growing up, has been the most comfortable place to be. Our energy. That space. That place. The universe completely organized a week or two that he has been pretty much amazing at home and has been the only one to put a smile on my face. And, HE IS TALKING TO ME.

It feels so different. I am used to being ignored all the time unless he wants something from me. As much as I love him inside and out, I still feel lonely. A lot. This past week has been an eye opener for me in regards to thinking about him…an older him. A different kind of mother/son relationship. The possibility of sharing dreams and feelings. Just plain old reciprocation. Damn, that would feel good. There is a new excitement I have about my son and this autism thing.

Pretending is exploding. He has willingly been EXPLAINING to me what he is doing. I think this is making our connection even stronger because I get him. When he tells me something that wouldn’t make any sense to someone else, I know what he means. I know what sounds/songs he is mimicking. I can play along in his pretend world and wow, is this COOL.

I just watched this the other day. A Brilliant Young Mind…OMG. It stayed on my mind for days. Just watching the trailer again now makes me cry.

There is so much to think about as Jasan’s mom and how society will play out in his life. Seeing glimpses of an older kid is exciting. Really exciting.

age 4

School on the other hand, well, that is a different story. His behavioral therapist was over in our home a few weeks ago to help with some things. Better use of language we use at times, things to do at home to make life a bit easier, and the main reason was to make sure what they do at school carries over to what we do at home. His behavior is THAT BAD. Don’t get me wrong; I have seen it at home too, LOTS, but just not as severe as what they are experiencing almost daily. The biggest thing I took away from that meeting was she was so surprised how engaging he was at home. He was like a different kid than what they see at school.

I was completely surprised. He is almost unreachable at times in school. There are two modes for him they say; destructive meltdown or unreachable, unteachable; in his own mind.

What?????

This bothers me. A lot. My gut tells me that some type of alternative school, not necessarily one only for autistic children, but somewhere where there is a different approach to learning. The typical public school, “try to fit me into your box” thing maybe isn’t the best for him. (He is in an autistic class within the public school system.) Maybe he is just to young to tell. The school thing is perplexing to say the least. I hate to think of his days as so difficult, especially being there so many hours. Heart breaking.

(I do need to add, he has an awesome team at school. I fully believe that he is in the best scenario for now in the area where we live.)

But… then there is real life. We all follow schedules. We go to work. We don’t always get to do what we want to do. How does he learn this? Through the “typical” way of doing school? I guess I will figure it out as time goes on.

Winding this post to an end, I just want to say this…

He is talking to me. A lot. I love it. I feel like we have a real thing going here. It is only going to get better. I love him so much I could explode. He told me he loved me tonight. We are the king and queen of adventures and I love that too. He makes me smile so big and my heart hurts when we are apart. he agreed with me that we are best friends while looking me in the eye. He is so beautiful in every way to me. Should I keep going?

I mean, seriously. Look at that face!

little jasan

 

 

Milwaukee Marriott.

Because Jasan is so literal, exposing him to new things is paramount. The more memories in his mind, the more he has to relate to. Sometimes I find myself getting complacent about the weekends because the week is so busy. Well, I am making an effort to change that.

We had such a great time at our first hotel stay, I decided that we should do another…but add a mini road trip to get there! Milwaukee; HERE WE COME!

Leaving for Milwaukee!

Yes, I realize Jasan looks less than enthused, ha, but that had more to do with the fact I was taking ANOTHER PICTURE. 😉

Once we hit the expressway, he rolled his window down and was feeling the speed. He usually isn’t a fan of wind in his face, but he was loving it. I was loving watching him experience it. He was embracing his hair blowing in the wind and the feel of “mph” in his little hands. So cute.

wind blown.

One of the many things I love about him is his ability to interpret sound and memorize it in such a detailed way that when he recreates certain sounds on his own it’s freaky good. Lately no music in the car has been his choice. “Mama, car sounds only.” I can only imagine what he was taking in when I look at that photograph.

While we were driving we talked a little bit about what we might do when we are there. Jasan’s idea of an amazing weekend would be literally to not leave the hotel. And honestly, on these hotel adventures, I want to just follow his lead. All week long he is told what to do at school. He would play outside until 9:00 at night if I let him, but he has to come in early to get to bed on time. It’s this and that or another thing, so on this weekend I let him run the show. I love watching him do what he loves and to see where his inspired impulses lead him… and I take photographs.

I pretty much knew I was in for tons of elevator and treadmill time. Maybe a splash in the pool, but the elevator was going to be his deal.

Here is the elevator!

And… he found them.

Observing, listening, looking. Checking out every nuance.

We walked into our suite and he squealed with delight when he saw the microwave. (That was worth the extra $ for the suite just for the look on his face. He also has a thing for microwaves.) I did my regular OCD unpacking thing and organized our space. I was pleasantly surprised and pleased at how nice our suite was, which made it even more fun for me. (I have a thing for fabulous hotels…)

We went to explore the hotel and tackled the workout room.

mama / jas selfie

how does it work

mama / jas selfie

We met a couple of friends in Milwaukee and they were with us for part of the afternoon. Edward knew his daughter Eva would love the pool at the hotel, so they joined in some of the fun. I was excited to introduce Eva to Jasan for a couple of reasons.

First being HER NAME. The movie Wall-E! And you know… Eve “ev-a!” Jasan is obsessed with that movie. Just the fact that he could meet a real Eva is so cool. And, he loves girls, so perfect combo. Eva also is beautifully autistic, so I was really looking forward to them interacting together.

Eva joined us in the workout room. My silent photo shoot started. 🙂

Eva left Jasan right.

Jasan left Eva right

eva and jasan

treadmills

eva and jasan

And did I mention how much her socks made me smile?

rainbow socks

Eva was bubbly and talkative. Inquisitive of her surroundings. Similarly, they were both very much into how the treadmills go around and around. I loved watching Jasan watch her check stuff out.

Eva look

jasan watch eva

Jasan had a lot of fun watching Eva going very fast. She was smiling and laughing at the exhilaration of how she was running so quickly and then we would press STOP. Then, repeat. 🙂

eva run!

After a bite to eat, we swam in the pool which is always fun. Eva and Jasan both love the water. The pool was a bit on the small side and was quite full of little ones, so we didn’t stay too long. We parted ways shortly after with Edward and Eva.

Jasan and I were back into hotel exploration mode. I love the feeling that I get when we are in a new environment and it is just the two of us. He holds my hand a little more often because I am his security blanket. I watch his eyes as he deciphers new information surrounding him; wide eyed and curious. Full of energy. And the sun set…

light at the end of the hall...

beautiful light.

sunset.

We ate dinner together and rode the elevator. Tons. I mean like hours worth of tons.

elevator

listening

checking it out

I am always so in love with how people react to Jasan when he is in his element. We must have seen 50 people or so that evening in the elevator. On his own he started asking people, “What floor?” and the elevator man he was. I sat there, watching in my glory to the faces of admiration about his cuteness. After we had seen the same group of women three or four times, I whispered to one of them about his autism and they smiled; as if it all made sense now in their minds.

fun in the elevator

We laughed and played elevator operator and connected in our way. I got on his level and he (without knowing) let me take photos of him. We had a complete blast.

And when the late little kid hour of 9pm rolled around and behavior started getting squirrely, we got into the cozy hotel bed and played iPad. He fell asleep in 5 mins and I fell asleep in 6. Snuggled like we love it. ❤

 

The sun peeked through our curtains in the morning and Jasan woke and double checked with me that we were still in Milwaukee.

heehee. 🙂

We woke and showered and the microwave was a big hit. I am in love with this photo of him.

microwave.

and this one…

love.

and maybe another angle on the first one because I love it so much.

microwave again.

The little coffee maker?

coffee

Was a super fun thing too. We brewed many cups of water…

And then back to the elevator before breakfast. I felt like I knew everyone in the hotel from the night before!

us.

morning elevator.

listening.

I wonder what he hears in there and what the vibrations feel like to him.

squinty

This may be my favorite. The squint.

 

 

We did venture out for a short while…

beach

Visited a park on the beach.

turbine.

(this photo taken by a friend.)

And literally touched a TURBINE. This was ways cool in his mind. He LOVES turbines. Who knew Milwaukee had one you could walk up to?!?

turbine shadow.

 

And then we ventured back home. Home sweet home.

More “mph” in his hands…

wind/mph

love.

and a tuckered out little love of my life.

sleepy.

We had a wonderful Milwaukee adventure. We connected and made new memories.

We met sweet Eva…

beautiful eva

eva

I love mini getaways. I love special adventures. I love watching Jasan be Jasan. I love being his mama. I love how he told me “I love you Mama” all on his own. (4th time I’ve ever heard it from him.)

I want more. More adventures.

sock love.

 

Hotel.

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Jasan and I were gifted a night stay at a hotel nearby our home and we went for it this Saturday night. (Thank you Lisa & Ken Leisering if you are reading this!)

WHAT AN AMAZING TIME. I cannot say enough good things about this mini getaway. Because Jasan and I do not live alone currently, it was nice to just spend some quality time together. Just the two of us. My intention going into this overnighter was to just let Jasan explore this space exactly as his heart desired. I would then, in turn be in awe of his perfection of himself and how he views the world.

It was magical.

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Whenever we have spent time in hotel rooms, Jasan has always gone for the thermostat. Of course! I let him change it to his heart’s desire. Hot, cold, on, off… This one was “Amana.” (Everything is named by it’s brand in Jasan’s world.)

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Oh! And we had so much fun in the elevator. We pretty much did the majority of our multiple rides just the two of us, but occasionally we would have other riders. An alarm would go off if people would press more than one floor at the same time (hence the noise canceling headphones.)

Now, I have been practicing for some time now just letting Jasan truly be Jasan. That means, I will not allow myself to be affected by other people’s reactions to him. So, while we were riding the elevator, I did not sush him. He was a little loud in the hallways at times, but I let him be. He was hugging kids like crazy in the pool and I let him go. You know what? Everyone loved him.

The alarm went off in the elevator when we were with two teenage girls and an older woman. Jasan was loudly matching the tone of the alarm while it was going off, and the girls were like, “Oh! He’s so cute!!!” and giggling incessantly. The older woman commented, after the alarm had stopped, “Oh my goodness!!! He matched pitch!! How old is he? That is not normal for 5 year olds to match pitch! You are going to be a singer, boy…” and all I could think was, HE ATTRACTS LOVE EVERYWHERE HE GOES WHEN I LET HIM BE WHO HE IS. I have seen it many times before.

I am done with sushing him to what I think society deems appropriate.

When I revel in his “Jasan-ness” he rocks it. We are both vibrating on a high. It’s FABULOUS.

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He hasn’t had much experience with these old school phones. (Its crazy. Am I getting old? Will he ever hear a busy signal? haha) His examination of this was too funny and so brilliant.

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“What the hell is this thing?” He is probably thinking. But then, his brilliant mind goes to this:

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I was giggling inside so much about how much I LOVE THIS KID!!!!!!!!! I COULD EXPLODE I LOVE HIM SO MUCH.

I feel grateful that he is oblivious that I photograph him all the time. Because I use my iPhone, I can put it on silent and he hears nothing. It’s fabulous. I get to be in my bliss creatively capturing the beauty of my son. WHAT COULD BE BETTER, REALLY?

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Those of you that know Jasan or religiously follow this blog know that the GUEST LAUNDRY was a huge hit. 🙂

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I love him. I love him fully. I love him regardless. I love him always. I love him EVERYDAY EVERY MINUTE. Even if he spits in my face sometimes. I love him. He is perfect.

Newsflash: ALL OF OUR KIDS ARE PERFECT.

When you look at your children that way, they will feel UNCONDITIONAL LOVE from you.

Think about that word UNCONDITIONAL. We all say it quite a bit, but I don’t think we all act it out, REALLY.

Loving someone completely and fully, WITHOUT CONDITION. Regardless of anything that they might say or do. They are NOT here to please US. We are given these children as gifts…to love them for who they are. However that is. It is my opinion that we do not grow up learning to love this way.

Think about it.

We are so used to reacting to conditions around us…what would happen if we just fully loved our children and they felt that from us, energetically, unconditionally? Worlds would change.

Just go have fun and let them be them.