I think it’s time to write again. Life has changed; in the BEST way.
It’s time to share the journey as the dynamic changes.
It has been a few years since I have written. A lot has happened during that time. Man, Jasan has grown! His brain is a whole different story now. Instead of being just the two of us, it is now the three of us. (Marriage happened!) Actually, it is 4 of us. Otis, our dog, counts too. 😉
I am looking forward to being inspired and sharing experiences again. Being a mom of a growing autistic kid has been so challenging, but also SO REWARDING.
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
This is a subject that has been creeping on me for a while. I’m not sure how to approach this one really; I have mixed emotions about it.
What a difference a year makes…
I have noticed a change between this summer and last.
There are a lot of kids in our neighborhood. Some of them are a bit older; maybe 8 or 9, but there is definitely an age range. When we first moved to this area there were no kids. As the years have passed, the little area where we live is full of kids. Now they are riding their bikes or taking walks around our circle as summer starts. (We are our own circle of houses; the road is a dead-end; not a cul-de-sac.) Most of them run wild. There aren’t parents outside keeping an eye on things. I don’t know what that feels like because that isn’t my situation. I try to think back to when I was a kid…did I roam the neighborhood? Probably. I guess it is just a different time now and I have a changed opinion on it.
If I were to let him play outside without me, Jasan could go into someone else’s house and if I am not there what may occur? This is the problem. I have no idea if something may set him off, at any time, that parent would have no clue how to handle a meltdown. Hence, he isn’t out by himself at the age of 6. I like him to stay nearby, and if he doesn’t, I walk with him.
Last summer all the kids were in our driveway. Probably between 5-7 of them. Jasan didn’t necessarily play “with” them, but I think he liked having them around. As much as he may be doing his own thing, he loves people. What breaks my heart is that I felt they all came to play or talk with ME, not to hang with my son. I had one kid for a reason and what felt like a hundred children that I had to watch over was exhausting (and annoying.)
So, with that said, this is a catch 22. Kids over or no kids over? I was finding the resentment towards other parents brewing in me. It wasn’t their fault, but at the same time, could they not see I had to watch all of their kids? Not fair in the least. In their defense, I am not comfortable with Jasan being outside on his own. Their kids can be. But, there is a kid in the neighborhood who has autism. Can they teach their kids to give our house a break sometimes? Do they just not get it?
2015 summer ended and winter came; no one is outside.
Now, here is 2016 summer. So far, the kids pass by and do not even say hello to Jasan. They know he is different and it’s almost as if he is dismissed. A birthday party just occurred last weekend a few houses down and all the kids in the circle were invited, but not Jasan. Even though, he was last year. We probably would not have gone because of the chaos, but it still…
I am sure that Jasan is happy as a lark playing in our driveway and hanging with his mom. He doesn’t know any different. Maybe this summer I can have a huge break and enjoy only my child.
Those are my selfish thoughts.
What bothers me is that he is just ignored. No “Hi Jasan!” anymore. I feel as if he is looked as the weird kid. You don’t have a child imagining he is going to be the strange kid on the block that no one comes to play with.
I love him beyond all comprehension so I feel sad.
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 was told by a well known author that writing about the hard times is as important as highlighting the good times.
Thanks Neil Steinberg. He wrote an article about Jasan and me in the Chicago Sun-Times in February. http://chicago.suntimes.com/columnists/steinberg-autism-spins-kids-parents-2/ During the interview conversation, I was so pleasantly surprised at how much fun I had talking with Mr. Steinberg about his kids, his family and also about writing. I felt blessed that he recognized my blog/autism as something to write about. But, one of the major take-aways for me was the comment above. Write about the hard times too; people can relate.
So, here I go.
I had actually been depressed for many months. Even when that article was written about us, I was feeling frustrated with my life and trying to push the depression away. Jasan was (and still is) having a tough time at school; for example, getting notes home that he is completely destructive and throws furniture, hurts others, etc.
That’s hard to take.
Photo by: Stacy Pahl / Jasan & me in photo.
I was not taking care of myself at all. No time for just me. It has been that way due to life circumstances pretty much since he was born 6 1/2 years ago. That is a long time to be doing it on your own with barely any time to recharge. I am sure many of you special needs parents out there can completely relate to that, whether you have a partner or not. (Partners aren’t always helpful and can sometimes even add extra stress to the situation.)
I did a lot of self medicating, now that I look back…wine was my friend for sure. When Jasan was younger, I had a few friends that had the room for us to come over and spend the night which would mean time for me to socialize. But, because Jasan and I sleep together, I would keep the poor guy up until he was exhausted due to my selfishness of just wanting more time with my friends. It has been things like that, over this time period, I have done because of starvation for recharging time, or even just time to connect with other adults/friends.
I have missed countless outings that I see on Facebook that my circle of peeps have gone to do. I even started getting uninvited to things because they thought I would feel sad due to not being able to go. That hurt just the same. Pretty much, I felt that it was a lose-lose situation.
Photo by: Stacy Pahl / Jasan & me in photo.
But here is the most important point- I was letting that be my perspective. For as many posts that I have written on this blog about CHANGING the perspective to the POSITIVE and seeing our children in a different light, here I am going down the “dammit, my life sucks; especially compared to everyone else” path. (And, as we all know, comparison is an evil thing to do to yourself, but easy to fall into.)
I have been on antidepressants on and off most of my life. I will admit, I am one of those unlucky people that had the chemical imbalance fairy hit me with her wand at birth. I have now found a new awareness about myself that actually I am dealing with bipolar disorder. That added a whole new layer to looking at my life and how I have always gone through these patterns of mostly depression, but also mild forms of mania where I feel I can take care of it all. I haven’t had a major crash down in a long time. Many years actually…I think age 27 or 28 may have been the last one. So, I have kept it together somehow for 10 years now. You can image how deep this episode fell. Add Jasan into the mix; I blew up at him multiple times because I couldn’t control my sadness and irritability (which isn’t the typical me AT ALL when it comes to him) and felt the worst guilt EVER in my existence on this earth.
I could not deal with that.
So, turning the corner, getting involved in some healthy group settings (and new meds for me) has finally paved my way to a new, better me. More understanding of how I am wired and how I can be aware of my mood swings. (Haha. Side note: this may turn any man that may have wanted to be in my life the other way now, but hey. Honesty is always the best policy, right? Take it or leave it.)
The reason I am sharing my very personal story with all of you is because what I have learned (even though I felt I already knew it) is that we have to find ways to take care of ourselves. ESPECIALLY because as special needs parents, we have tons of extra stress on our plate. It is scientifically proven that extra stress literally changes our DNA in a negative way. (That blew my mind.) We age quicker and die earlier.
No thanks. I’m not going to go that route.
I honesty believed I didn’t have the time, but I now learned that I do, even if in little ways. Also, I NEED TO ASK FOR HELP. That is hard to do sometimes.
On top of that knowledge, I fully believe that our special and beautiful kids can sense our energy on a more sensitive level. That, in itself, can make a huge impact on them. If we are constantly on edge, what kind of effect is that going to have on them? It can’t be a good one. I also believe that kids can manifest sickness when we are “off” as parents. Yes, there are germs, but the holistic part to our existence can show up in illness.
These images were taken at two different ER visits. I was in a bad place when this occurred. We are almost as one. He knows when I am not happy or struggling.
I need to be strong. I need to take care of me so I can take care of him. He needs me more than anyone in this life. I am so completely dedicated to being the best for him that I will do anything. Literally.
For me that means exercise, meditation, writing, photography, time with friends, movies, and music…to name a few. I need these components in my life. I will be a happier Heidi and a BETTER MOM.
I didn’t believe this was possible 8 months ago, but now I do. It’s just part of my lifestyle now. I want to also teach Jasan by example that he needs to do the same…take care of himself.
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