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?
Wow. What a year this has been so far! So many wonderful things have happened in our lives that I’m overflowing with gratitude…not just today, but on a regular basis.
Look at that face! Every single morning I love beyond words that I get to wake up and he is right next to me. He is so joyful and happy most of the time, and I love how we play off of each other.
Autism is a part of our lives, and you know what? I am thankful it is. He chose to come into the world this way and I love every bit of him.
Our world is filled with sound effects, singing and lots of talking. I waited a long time for him to speak his mind, so I say, “BRING IT ON! TALK MY EARS OFF!” His unbelievable ability to mimic sounds still blows my mind everyday, and his love of music just fills me up. I was praying that he would be musically gifted when I was pregnant with him because I know how much that gift is important to me personally. When he sings, my heart sings. <3
I am thankful for laughter. He is not the type of kid that laughs a lot. He is happy 95% of the time, but he isn’t always laughing (like I tend to do! HA.) When he does laugh, oh my. BEST SOUND IN THE WORLD.
We are blessed with such incredible family. I cannot even count how many times they have gone out on a limb for us. I could not say “thank you” enough to express the gratitude I have for them…
Friends. For the first time in my life I feel as if ALL the people surrounding me fill me up. There aren’t any relationships in my life that drag me down or exhaust me. This makes me realize how much I have grown emotionally. Life feels amazing. I feel really, really good. The people in my life accept my son for who he is (and me too!) I know Jasan can feel this too.
The opportunities that have come my way have given me a whole new outlook on life. Creating this blog, sharing my heart and my perspective through our story has opened up a new chapter for me.
Being able to actually exhibit my work was one of the most incredible experiences of my life. I cannot wait to do it again! I have a passion for images and telling the story; the story of how our kids are so perfect just the way they are.
Thanksgiving can be every day. It’s all in how we choose to see life.
Thank you to each and every one of you that take the time to read this blog and share in our journey.
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.
In honor of Bill Maglares. You are in heaven now watching over your family. They will always have their own personal angel…
I am really getting used to just doing our own thing wherever we are. Sometimes being self-conscious will still creep up on me, but mostly, I OWN IT. As Jasan gets older, I appreciate who he is becoming even more. I keep reminding myself to step back and look at the big picture. I may not totally understand everything now. But, I picture myself looking back at his life when he is in his twenties and it all making sense. Why does he have an obsession with appliances? What is it about fahrenheit and barometric pressure that makes him smile so much? Why does my son prefer Best Buy over Toys R Us? I don’t know, but I’m his biggest cheerleader.
We hung out at good old Best Buy for quite awhile today.
Refrigerators were a hit.
There will always be the beloved washing machine.
And now, the most recent addition to fun spots to go in Best Buy? The printer aisle. We had a lot of fun with sound effects and powering multiple different models on and off.
On a BUSY Saturday afternoon was I spotted taking pictures of my son LOVING on appliances from many WEIRD angles?
Did I care?
Did a million Best Buy employees come ask us if we needed help?
Did they look at me weird when I said my son likes to hang out by the washing machines and we are just pushing buttons and listening to sounds?