family

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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So many thoughts on dating.

Honestly, I am not quite sure where to even begin this post. I have laid in bed a few nights in the past couple of weeks thinking about this topic. Of course, as I lay there in the dark as Jasan falls asleep next to me, my thoughts gather perfectly. At the end of the day when bed time rolls around for my little guy, the effort for me to stay awake after he drifts off to dreamland is usually just too much. And, alas, there goes my perfectly thought out blog post since it was all written in my mind at that moment. Now I sit here with some time to write and my mind scatters…

It has been SO long since I have been in a relationship. A “do life together in each other’s daily reality” kind of situation.  I am not by any means complaining about this fact. I haven’t missed it. Actually, I think it has been a very good thing for me (and for Jasan.) I can honestly say that I have had the most personal growth to date over the past year. I needed to be focused on me and how to be the best parent for Jasan. The thought of dating has not even entered my mind until recently.

The reason I am choosing to write about this here is because it is a completely different ball game when you have a child with special needs. I think dating as a single parent is challenging as it is. Bringing another person into a family situation; wow. A lot to consider. Possibly blending two separate families with children all coming together…lots of dynamics there.

Autism adds another level of complexity.

I really do not want to choose to look at this as a huge difficulty, but I do want to be realistic with my feelings. Because this is the beginning of my thought process on even starting to THINK about how it would all work, it feels overwhelming. I have moments where I feel excited about the dreamy picture in my mind of my ideal situation. As I work through this, that is where I want to choose to keep the majority of my thoughts. But, there are a few kinks to think through first.

I love my life. I love my son. I love my family. I have chosen to live with my mom and my stepfather, and we have since Jasan was one. He is almost 6. It started out to be for financial reasons because of the break up with his father, but as time has gone on challenges with autism have kept us here with family. It has been beyond necessary for someone else besides me to know Jasan through and through. The only way for that fully to be accomplished is to live with him.

Jasan 2015

My mom and I have a great relationship. We have pretty much partnered in raising Jasan because she is so helpful to me. When I say helpful, I do not mean babysitting when I want her to so that I can go out with girlfriends. I mean the day-to-day activities that she helps me with. For example, she knows our routines. On Jasan’s school mornings she takes it upon herself to wake at a certain time so that she starts breakfast for him. We live in the downstairs part of the home, so when we meander upstairs she is cooking away. This is extremely helpful for me. Mornings can be smooth as silk, or extremely difficult. On the days when we are running late due to transition meltdowns, I know it is vital to get food into his stomach or he won’t be able to handle anything at school…but we also have to get out to the bus on time! Not to mention, I need to get to work on time…it can be pretty tricky sometimes. Through it all, I need to stay as calm as possible to keep things moving along. To have her there as my backup picking up slack is huge. HUGE!

There are many examples I could give that show how helpful “Grammie” is. But, Grammie and Grampie (my stepdad Matt, who works many hours) also have their own busy lives. The three of us are the ones on this earth that know Jasan best. Because he has grown up living with his grandparents, they are hugely influential in his life. What a blessing this is! I feel it is extremely imperative that he has someone besides just me who “gets” him.

Jasan

I have my couple evenings a month where I have things scheduled that I am involved in. If I am out late, which is not often, my mom is the only other person that can put Jasan to bed. Parents that can just call any babysitter so that they can go out for an evening don’t even begin to realize how fabulous they have it. That does not exist in my world. So, with the little bit that I have explained, where the heck does going out on dates fit in to this situation? She sacrifices a lot for me. Unless she had no life of her own and only lived to hang out with her grandson, it’s going to be slightly challenging.

The dynamic between Jasan and me takes most of my energy. As he gets older life has gotten more interesting, but also more difficult. At this point in my life I know what I want. I know that I have the power to choosy when it comes to what and who I let into our lives. Would it be easier to not create more emotional (possible) drama for myself? Maybe. But, I do believe that as time goes on we expand. We have desires and dreams that grow our thoughts. If we don’t keep up with them, that is when life begins to lose its luster. My hunch is that this is part of my expansion. This is why these visions of a partner in my life are coming to me. I need to be open and willing to roll with it.

I know there is a man out there that will love, accept and understand Jasan as if he were his own (and be crazy in love with me as well.) I believe this. I have all the patience in the world and I know that he will show up in my reality somehow when the universe beautifully sets it up to be so. If I choose to start opening up my mind to this idea of relationship with all of this worry and fret, he will not come. If I let my walls come down and trust that everything will work out, guess what?

It will. ❤

I had planned to do a lot more writing about details on the difficulties. I kinda like how this post took a turn for the positively hopeful! I think I’ll stay here.

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2014 Reflection…

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Well friends, we gloriously ended the year with the first lost tooth (happened on Christmas evening!) and an obsession with USBs…

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Shredding…

and even Pictionary!

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This is “Google” by the way…

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I love how he has changed even in just the last few weeks! Language is exploding and that is so very exciting to me. He is definitely GROWING UP. 🙂

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We have had LOTS of snuggle time. I think that is always secretly my favorite part, and always will be.

Uncle Todd (my younger brother who lives in AZ with his amazing and lovely girlfriend Jodi) were here! It was so fun to watch him watch Jasan. I realized how much I miss my brother and how I wish he could be around Jasan more often…

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I appreciate where Jasan and I are in life right now. It feels good. Amazing things are in the pipeline for this next year, and that is REALLY exciting. The amount of personal growth that I have experienced in 2014 is out of this world. I still feel so blessed to wake up next to the best gift every morning. He is such a huge reason for my smile. I love my little dude.

I want to increase the momentum of “Following Jasan” in this coming year. That is one of my goals. Life got unexpectedly busy in September of this year, in a good way, and my photography and writing had to slow down. I am aware of the fact that I miss it and need to make the time to focus on this part of our journey again.

I do have a few photos I wanted to share that I haven’t gotten a chance to blog about…

Thank you for taking time to share in our journey. I am looking forward to writing and photographing our stories of growth (and sometimes of struggle) with you to share my perspective on this journey of beautiful life and autism.

Cheers to 2015!

 

Time.

Today I learned of a friend’s passing. He was very young and leaves behind a beautiful wife and two amazing autistic children. My heart feels completely saddened for this family. A husband and a father is now gone. Dynamics have changed…so unexpectedly.

We have all heard the phrases, “Live life like it’s your last day on earth.” “Life is too short.”

But do you? Really?

Those statements really hit you when an accident happens, and it seems unreal. Say what you want to say to your loved ones. Make time..

Quality time to spend with friends and family.

Love a little more. Hug a little tighter. Make connections. Keep in touch. Just simply BE happy. Realize and be grateful for the blessings in life.

We don’t know when our last moments will be.

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In honor of Bill Maglares. You are in heaven now watching over your family. They will always have their own personal angel…