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.
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.
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.
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.
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.
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!
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.)*
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.
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. <3
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. 🙂
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.
Do research on the perfect tent to buy. (Jasan and Mama size of course.)
Buy a book and watch videos on YouTube about camping.
Buy the tent in June.
Learn how to put the tent together.
Practice “camping” under our bedroom glow in the dark ceiling stars. (LOL.)
Give it a go outside on the backyard deck one time.
In July, pick a campground. Go check it out and visualize the experience. Make a list of things we would need/do.
Camp for real. I hope I can make a fire.
(Did I just really write all of that? <3 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.
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.
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.
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 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.
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.
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.
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.
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.
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.
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. <3
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!
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.
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.
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.
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. 🙂
And did I mention how much her socks made me smile?
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.
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. 🙂
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…
We ate dinner together and rode the elevator. Tons. I mean like hours worth of tons.
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.
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. <3
The sun peeked through our curtains in the morning and Jasan woke and double checked with me that we were still in Milwaukee.
We woke and showered and the microwave was a big hit. I am in love with this photo of him.
and this one…
and maybe another angle on the first one because I love it so much.
The little coffee maker?
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!
I wonder what he hears in there and what the vibrations feel like to him.
This may be my favorite. The squint.
We did venture out for a short while…
Visited a park on the beach.
(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?!?
And then we ventured back home. Home sweet home.
More “mph” in his hands…
and a tuckered out little love of my life.
We had a wonderful Milwaukee adventure. We connected and made new memories.
We met sweet 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.)
There are certain nights during bedtime routine that I just fall in love with Jasan so hard it’s beyond my comprehension. All of you parents out there know the kind of love that you feel after you have your own child. There are no words to describe what love feels like after you have had that experience. Of course I love him hardcore…ALL OF THE TIME. But certain nights, he just grabs me and pulls me in even more.
Tonight was one of those nights. Jasan and I have quite the lengthy bedtime routine; it’s not the quick: read a book, lay in bed, lights out, “see you when you wake up!” kind of scenario. He is very detail oriented and routine based. We do the same thing, all the little steps, EVERY NIGHT. I have to admit and be honest…sometimes I am just exhausted and I wish he WAS one of those kids that was super easy to put to bed. Evenings (few and far between) that I may want to go and have an adult evening out past 7:00 pm, I review my whole thought process of why I do things the way I do. Maybe I should just work on getting him to fall asleep alone and not be so dependent upon me. It would be awesome if he were the type of child that ANYONE could put to bed. Wow. If that were the case, I could just hire a babysitter like every other adult and go out for an evening!
But you know what? He’s not that kid. He never has been. What I LOVED about tonight was that I sang him to sleep. As I had him cuddled up next to me with his head nestled on my chest, I was reminiscing about the baby days. During that time period of life, we were alone most of the time. I would put play lists together of slower songs that I loved to sing to. I was a very hands on and physical touch kind of mom, so he basically never slept in his crib. (I know there are many different opinions out there on sleep and what the right way is, but this is my belief. DO WHAT WORKS FOR YOUR FAMILY. That is all that matters.) So, with that said, Jasan was basically my snuggle bunny. The thought of him sleeping in his crib away from me and his dad was just not happening. Jasan’s father is of Mexican descent, so in his culture is was natural and normal for your babies and kids to sleep with you. When his dad and I were still in relationship, that was what we did.
So, blissfully for me, I was able to be a stay at home mama and he would fall asleep in my arms to his heart’s content. I would play music ALL THE TIME. Music is a huge part of my existence, so I wanted it to be a core part of him. When he was a little baby, I would dance around the room with him every day. I wanted his body to feel the rhythm through my body and movement. I would gently tap the beat of the music on his back. I would sing to him… and that became a staple for bedtime.
As he has gotten older our routine has changed ever so slightly into what it is now. He is much more adamant about me being quiet and it being a “Jasan Do” kind of situation which OF COURSE, I welcome! When I find myself completely in the moment, like I did tonight, I feel so happy. It is so easy to second guess the past and the choices that I made in certain situations. There are also a lot of things that I did during his first couple years of life, even as naive and inexperienced as I was, that I am so proud of. Those things are what forms a huge part of who he is now. I am so excited to see how his personality forms as he grows. I know that as uniformed as I was when he was first-born, there were special parts of being human that I wanted to be drilled into his existence.
Physical touch. Huge. Being a past massage therapist, I know the benefits of it. But, I also understand the healthy emotional benefits of it. It comes natural to me, and I really wanted him to be a child that was accustomed to lots and lots of snuggles, hugs and kisses. God knew I would be perfect as his mama because he is such a sensory seeker. He craves touch. There isn’t a day that goes by that he doesn’t need to “crash” at some point. With the amount of communication skills he has lacked and still lacks to this day, God balanced out with physical touch for me. Knowing my personality, I would have had an extremely hard time with an autistic child that lacked speech and did not like to be touched.
Tonight hit me because he was very calm. He was extra snuggly, and being able to sing quietly and then hum to him as he fell asleep brought back so many precious little teeny guy memories. It made me feel good because I did a lot of things right for him. Knowing him and all about his autism now, makes me think back with a different set of lenses about those early months and years. I love how sometimes things are just meant to be.
Without a doubt he was meant to be my son. Just the way he is. Autism and all. I was meant to be his mama. We have a bond that is indescribable. He knows me more than I think he does. He feels EVERYTHING that is going on. I know I understand him, but I wonder if he is SO MANY LEVELS beyond where I think he is… That is what my intuition says.
My gut is never wrong. He is something special. His life is going to be spectacular.
This I KNOW.
Every now and then I need a bedtime like tonight to wash away any doubts about why I do things the way I do.
Our routines are in place because this is what FEELS right between my son and me. I know what he needs. He is still so young and I am willing to sacrifice what I may want from time to time to build the emotional foundation of safety, confidence, and self-worth for him. If that means he needs his mama to lay with him as he falls asleep, that is what I will do. Gladly.
The photos above were taken some time ago…
The photo below I love. Jasan is having a loving moment with his Grampie. As he was running around the house half-naked (as he loves…who needs clothes, really?) he is giving the best hug EVER. (And when you are 4, who cares if you are naked at home anyway?) Heehee. 🙂