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.)*
This post has been a long time coming. (I have been absent for a while. Re-creating my love for this blog…)
Jasan started at his new school over the summer, and is now in his first full school year there. I cannot express enough how completely IMPRESSED I am by his school.
At first I was scared. Really concerned that he would hate it and have a hard time transitioning. Of course, he was fine. (I need to give him more credit! I get freaked out more than he does about these things. I love his resilience.)
I was a little nervous, but as time went on, my emotions flipped to appreciation. Amazingly, every staff member at the school, whether they are his teacher or not, KNOWS HIS NAME. There are children from ages 6 through high school! That is a lot of people. They have a monthly parent night where we are provided support. They have gone as far as thinking about the parents and their struggles too… it’s a complete family package and that means the world!
I have realized how important these types of schools are. As I learn more and more about kids with special needs, including Jasan, it is apparent that they really do need extra support. They need to learn all the details of the way the world works down to the specific steps of socialization and just learning how to “do school.”
Neurotypical kids don’t need to learn how to accept redirection. They naturally pick that up on their own. Accepting a NO. Looking people in the eye. Having boundaries. Learning how to calm their bodies and how to label and understand their own emotions. These beautiful kids need these special and amazing teachers to be on their side and help them learn and navigate through the school years. I am so thankful that Jasan is where he NEEDS TO BE.
Look at the person
Do the task
Check back (ask “Is this what you wanted?”)
Look at the person
Make the correction
Check back (ask “Is this what you wanted?”)
Look at the person
Make the request
Wait for an answer
If granted, say “Thank you.” If not, say “Okay.”
Look at the person
Write the redirection
Ask staff to “Please sign.”
BRINGING UP A CONCERN
Ask staff for permission to bring up a concern
Appropriately state your concern
Accept the final decision
Say, “Thank you.”
Accept the redirection
Wait 5 minutes
Ask staff to bring up a concern in private
Accept the final decision
Say, “Thank you.”
The universe has taken care of us, again. Always will.
Because my job involves working with young kids in day cares, I see a few here and there in my classes that I know need that kind of one on one support. I see autism, ADHD…just undiagnosed. I go in to different centers every day and spend short periods of time with them. I try to take extra care of those special needs kids because I know their words are different from the other children. I hope that they end up like Jasan, in schools that can offer them what they need.
This is a chapter in our journey that I am so very thankful for. I had no idea what a school with that label “Therapeutic Day School” was going to be like. I am blown away!
This is Jasan and his new friend Rose. They are in the same class together. I love how there is no judgement between them. They can both be their unique personalities and accept each other completely. Priceless. <3
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. 🙂
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.
If I am having a down kind of day, taking pictures of Jasan gets me into creative mode and helps elevate my mood. These photos are a result of one of those days…
It was cold and sleety on this day. Jasan insisted on sliding this window open regardless of the weather. I let him do it figuring it was his way of experiencing the weather. He told me to make a CLOSED sign that would read, “Will return at 7:20 AM.” So, of course I obliged.
He has been pretending a lot lately, which is awesome. He uses his memory bank of experiences to pretend. I call it “literal pretending.” He wanted the closed sign because of the snow. He kept opening this window and telling the imaginary people outside to “Go the other way.” ha. Love it.
And then, he voiced his annoyance with me. “Mama, no pictures.”
He is definitely growing up. He better get used to pictures though; that’s never going to stop.
For those of you that don’t know this little fact about Jasan, well, he is very infatuated with washers and dryers. He has been for years! You would have thought that I would have come up with the idea to visit a laundromat much sooner, but alas. Age 6 and we have finally made it.
Apparently, we now will be washing our comforters on the regular at this place. 🙂
So, you put money into the VRT machine which therefore loads your special card with credit. No more quarters needed; you swipe and are good to go!
I love how he is going through an independent stage (with certain things.) He does not need my help; goodness no! Cutest thing ever. We picked our two washers, #10 & #11, and got things started. Huebsch was the brand name of all the equipment in this particular place, so of course he called them by “name.”
Front loaders are very cool but they also had old school top loaders…
He is exploring the feeling of the vibration with his chin. He also liked that he had a 32 on his sweatshirt and he found the 32 in the laundromat. (It’s the little things!)
I love how Jasan is friendly, but the one part of the laundromat that can get a little out of control is how he wants to “help” everyone there. He will walk up to random people and ask if he can help them load their clothes in the washer. lol.
Women are usually understanding and pretty cool about it, but men? Ha. The ones he has chosen look quite confused when he offers his assistance. It is hard for me to tell him “No” in the moment. He doesn’t understand the social awkwardness of what he is doing. So, in preparation for next time, BEFORE going inside we will have the talk about people we don’t know. Can’t help everybody! I love his innocence though. I kind of wish it was okay. It’s precious.
These are the things he will remember. I hope that he feels my genuine interest in what he likes. As boring as this may be to many, it is completely fascinating to my son. These little adventures to nurture his curiosity just builds his bond with me. I want him to feel like I build him up; and if he is really into something we can go check it out and he can explore the way his brain wants to.
People can look at us and wonder why he is making mechanical sounds and getting so excited because the spin cycle is on, but I don’t care anymore. That is who he is and I think he is a rare gem.
Lounging around this morning, I started reading some of my old blog posts to remind myself of where I used to be and also realizing how much Jasan has grown up. Wow. So much has changed. This post grabbed me. Wanted to share again……..
We see (and hear) the Metra train all the time. Rarely do we use it, so Jasan and I ventured out. When I mentioned to a few people what we had in mind for the day, they said, “Where are you going?” and I replied, “To Chicago!”
I got a look from one person who thought it was ridiculous that we weren’t going anywhere specific outside of the Ogilvie station. Some people just don’t get it. The cool thing about this adventure is that it is not about the destination. It is completely about the journey. The details about the train. The huge train station at the end of the line in Chicago. The elevators! The escalators! Oh. Endless things to check out without going out of the train station. Not that I was opposed to doing anything else once we got downtown, I just knew we didn’t need to.
I knew that would be plenty to fill him up with a day full of happiness…
Here it comes! The lights shining our direction and the anticipation of loud train sounds about to be near.
The top floor is where we gravitated to and it was pretty perfect. Empty. Just us.
I had tons of fun shooting him. Of course I was using my phone on silent; otherwise he would have had none of it.
(He is wise to me now…)
I loved all the nuances he was noticing…
The cute coat hook.
Watch your step…
We approach the end of the line.
His eyes lit up as we got off of the train. All of the people, the huge train wheels, the multiple trains on multiple tracks, the hustle and bustle feeling everyone getting where they need to go… Taking it all in.
We made it…
The screens! The clock! The light! The windows! (And that is just when you look up…)
“Mama! Found the elevators!”
“This way, Mama…”
This was my favorite part of the whole day. There was about 45 minutes straight of up and down the escalators, and he held my hand almost the WHOLE time. LOVED THAT.
If you have read earlier posts, you know he is a fan of “OTIS.” He only knew Otis in elevator form. It was way cool to meet Otis in escalator fashion. 😉
Obviously we separated after a long while of hand holding and up and down to switch it up… Jasan up and Mama down… Mama following Jasan (go figure!) and Jasan behind Mama…
But then the elevator needed revisiting.
Otis escalators… Back for more…
Do you see a pattern here?
As boring as this could be for me, I choose to not look at it as so. I document him. I watch him figure things out. I Let him make his own choices. I let him lead the way and feel like a big guy. Independent. Showing ME the way. Letting me into his world. It’s beautiful.
But, adventures always need to come to a close…
I didn’t know this until Grammie told me when she picked us up afterwards…
Jasan told Grammie (on the way TO the train) to take us to “kiss and ride” so we can get on the Metra.
I have to admit; I have definitely had a rough day. I am quite blessed to say that tough days where I let my emotions go down the negative path are few and far between. Today has been the exception to my positive streak. I am sure parents of special needs kids are here, where I am today, more often than not. Hence my decision to just sit and write.
I love my son more than I can even explain. I think that is why it feels so incredibly horrific when I have days like today. Days when I just give in to complete mental exhaustion. Why can’t I just have a day where I don’t feel like I am walking on eggshells? The mood swings can come out of nowhere and I some days feel like I am done with it. I am done with patience. I am done with overthinking. I am done with staying calm and looking at the bright side.
I wonder what it would be like to have him come to the grocery store with me and just comply? Or go to a movie with me and sit through the whole thing? Or be able to play like other kids do and just go be free for awhile? Or be able to handle a simplistic no? Not even a NO to something big. A NO to the smallest thing and here we go.
Mama has to tiptoe so that there is no meltdown.
I. am. so. tired.
This feels like a different stage for me. The toddler days are over. Now he is a little boy. His mind is maturing and wow things are different. Interacting with kids are different. I see how other kids AVOID him sometimes.
OUCH that hurts. A lot.
I do realize these are MY feelings, not his. I need to always put that forefront in my mind, but man, is it hard. I have bawled my eyes out driving home from friends’ homes where I thought that he would never be pushed away by the kids. Well, I was wrong. Big time. I had a little guy say to me (a situation where a bunch of kids were present, and obviously the boy didn’t realize I was Jasan’s mom) “Oh, HE isn’t staying the night, is HE?” with that annoyed tone.
I have to realize the situation as it is. Not everyone sees Jasan as I do. This is a new stage of grieving for me, the ideas of a little boy and the things we would do and how life would be without autism. This experience of having a child is my only one. Every stage is a learning experience, but now with autism involved. Completely different than what I imagined pregnant with a little munchkin in my womb.
But even as I sit here and write this, he is playing with water in the sink. He just said the cutest thing to me and it is words coming out of his growing up self. Adorable. Completely. I look at him and all of this bullshit washes away.
I have been practicing the mantra, “EVERYTHING ALWAYS WORKS OUT FOR ME.”
I guess I am going to add, “EVERYTHING ALWAYS WORKS OUT FOR JASAN, TOO…”
Tomorrow is a restart. No more negative. Positivity and LOVE always win and bring the best into my life experience.