General

Year 13…

October 4, 2022 By Heidi Allen 10 Comments

Hello all! It’s been many years of being MIA from this wonderful method of communicating, but it’s time to come back. I can’t think of a better time to start. We are now embarking on the teenage chapter of life!

My love for writing has been dormant for a very long time. It feels good to sit with my computer in my lap and let my thoughts flow. So much life has been lived and many changes have happened since I have last been here! I have decided to wake up my love of sharing our story. This is a wonderful creative outlet for me, but the overall intention has always been to connect with others out there that have loved ones in their lives whose brains may function different than whatever the f@#k “normal” is supposed to be in society.

I will be eternally grateful for my son coming in to my life experience. My mind’s view of the world has been broadened in so many ways. Thirteen years ago he flipped on a light switch in me. It has been a journey, but I am in a place where I do my best to learn and dive into a loving, accepting place for everyone I come across. I honestly don’t think I would have become the person I am today without him. (I could write a whole post on just that subject!)

It’s kind of funny…it seemed that during his actual birthday week, his attitude started to change. As I giggled to myself realizing that I definitely have a teenager now, I noticed right away that there will be a whole different set of challenges. I am sure that every parent feels that. The tricky part for me is that our situation is a bit different.

I hate comparisons, but sometimes they are necessary to make assessments. A very good friend of mine has twin boys that are 6 months older than Jasan. Occasionally we all get together and I watch her boys interact with the world. As our boys have grown, the differences have become more significant. Physical development obviously, same.

Mentally, very unalike. Not better or worse, just dissimilar. As you may guess, knowing what most of the world recognizes about autistic traits, reading social cues and interactions with peers run on different parallels. Neurotypical people have learned facial expressions and body language by default. Neurodiverse individuals struggle more in that regard, which I would assume makes living life in this society very effortful.

I have read many articles written by those on the autism spectrum that talk about masking. Masking would be defined as the act of hiding one’s autism related behaviors, as well as displaying socially expected behaviors, to fit in. It has also been explained that the process of masking involves applying social skills MANUALLY rather than UNCONSCIOUSLY. It requires constant focus, and effort.

That. Sounds. Exhausting.

It also seems unfair.

At this point, I don’t think that Jasan is experiencing this at a substantial level (yet.) He still does his own thing when I am with him; stimming the way that he does. At home he skips around the room, scripting videos from YouTube that are present in his mind at that moment. He always has his laminated pictures nearby (of whatever his interest is at the current time.) I have always presumed that those pictures are a comfort item. He literally has a few with him at ALL TIMES. His little pile will follow him around the house, and when he leaves for school he has a few in his hand and the rest that are meaningful that day go in his backpack.

At school they all remain in his backpack. That is the rule. This is probably helpful so he realizes he can function without them, because in his adult life that would be weird to walk around with laminated photos in his hands. (See? Right there. A form of masking that may occur. Having to act like the majority of the world and doing what everyone else does. In turn, he excludes a comfort item. Now, the comfort item may change and become something that doesn’t appear “odd” in society. But the point is, masking. An example of how it sucks.)

When we are in public, he has his iPad or phone in his hands. He has started to carry a bag or backpack wherever we go with his pictures inside. He is my budding photographer (yesterday we discovered that he has 34,000 photos in his phone right now!) but what he loves to take pictures of is entirely his own niche, and I absolutely love that about him. The reason I mention this is because when he is in action, I am SURE people are wondering why he is taking the pictures that he does.

Right now the main subject of interest is cars. He knows *almost* (but feels like everything) about models of cars and their aesthetics. His car photos always target the rear end of the vehicle. He also likes to focus on the license plates themselves.

So, you can imagine when we roll by a car that catches his eye in a parking lot and he jumps out to take a pic, people wonder WTF? We have even had to deal with some questioning why… or we just wait until people leave the area. (The easiest way, lol.)

We were at Woodfield Mall the other day and he noticed the address numbers on the bottom of the store windows. He crouched down and took a picture of each number as we walked past.

I had good friend participate in a craft show recently, and it was held in a large high school gym. Jasan’s eyes immediately took flight to the huge scoreboards with LED numbers and of course, he was totally all over that! Through the sea of people he made his way to each end of the gym and positioned himself, very obviously, to align himself with the best close up shot.

I stood behind him and noticed a few women nearby watching and questioning what he was doing. I usually look at inquisitive people and smile. It deflates the moment, of which Jasan doesn’t even recognize, but also makes me feel better. And hopefully, opens the mind of those that see him as strange.

Don’t judge. Just accept all humans for who they are. Instead of situations being weird, why can’t we as a society start to think, “Cool! What is that guy doing? Must be something interesting…”

Coming back around to social development, 13 year old autistic, neurodiverse Jasan compared to most 13 year old neurotypical kids is wildly obvious to me. The interests and conversations are distinctively different.

Having a group of buddies and talking about girls, playing team sports and starting to notice development of social circles in school is how I see the neurotypical 13 year old boys around me. Jasan, on the other hand, does not have a friend group outside of school. I highly doubt that he interacts with the kids in his class as if they are personal friends; he most likely just exists on his own in the same room with them all day.

He doesn’t like sports. He likes his school, but because all of the kids that attend are autistic, he is not experiencing diverse social groupings. That doesn’t exist there. There has not, even for a blip of a moment, been any mention of being attracted to another person in a teenage romantic sort of way. (THANK GOODNESS. I haven’t even began to wrap my head around that stage of life yet.)

Jasan currently seems to be happy in OUR bubble. Still hanging out with his mama and going on our version of adventures, or just hanging out each doing our own thing but in the same space. On dad’s days off, we have family days and he doesn’t want to stray from that yet…

He still finds joy in skipping in front of the house pushing the hand truck/dolly just like he did when he was a little guy. There are many little routines that continue to hang around that seem juvenile, but I envision his play on imagination during these times to be highly evolved. He doesn’t need anyone to walk along with him; he is happy in his own private moments of the movie he is acting out in his mind.

Now… I’m not going to lie. As I write this, I realize how selfish it is for me to want to hang onto this phase where he is cool just being with me. But, inevitably it will change, and I know that will feel weird. Sad in a way, but in the same breath, I always feel elated when he evolves. I feel unconventional in regards to parents who make mournful comments about their kids growing up. In my situation, these are exciting times. That excitement trumps the loss of the kid stage, every time.

The phrase “stay in the present” that we all hear often is my focus these days. I want to make a practice to keep it that way. Time is not slowing down. Independence is a wonderful thing that I am excited for him to embrace. I don’t want to miss a thing!

I think I’ll end this post here. There is a lot more to talk about as time goes on…

Thanks for spending a few minutes here with me.

New little family.

February 7, 2020 By Heidi Allen 10 Comments

2020 is here! I have a great feeling that this is going to be the best year yet.

2019 was a pretty big deal, too. I got married in May. I honestly never thought I would get married. Being the age that I am (42) and living the amount of life that I have so far, I kinda just decided that I would be okay with just a long term relationship; a life partner without the need for a piece of paper. Or, even just stay single until Jasan aged. Years were extra rough when he was a little guy, and dating was near impossible.

Prior to becoming a mom, I was always in a romantic relationship. I didn’t REALLY know how it felt to be an adult and be alone. So, as you could imagine, once Jasan arrived and I realized life was not going to be what I “expected” once the diagnosis of autism appeared, I was forced to experience the single life. I now know that it was the best thing that could have ever happened to me, and extremely necessary.

It was time in life to focus on my son, which also forced me to look at myself. I knew nothing about autism then, but I do know that Jasan was meant to be my child. He is perfect for me. Jasan had to be number one. He has taught me what love really means. Being the parent of an autistic child in a neurotypical world takes some getting used to. Lots of lessons to learn. It feels like lots of battles to fight at the beginning, but I was able to move on from my negative way of looking at my day to day and see the good things. The older he gets, the more my passion grows for neurotypicals to try to understand people who are different from them. As much as I want the world to be perfect and accepting of Jasan, I know that will not always be the case.

When Jasan grew beyond toddler years, life began to change a little bit. I was never able to call a babysitter and go out to have time on my own, but Jasan would be able to stay with my mom (aka Grammie) for periods of time and even go through the bedtime routine with her. It gave me a little bit of flexibility to go do some “adulting,” occasionally. Funny enough, Evaristo (my husband) and I connected through Facebook. I would have never guessed I would meet my husband there, but hey. The times of social media!

We decided to meet for dinner and the minute he walked in the restaurant and started walking towards my table, I knew something was different. Number one, first impression, MAJOR attraction. He was just as hot as his picture. And his smile!!! O M G. Once we started a conversation, I was intrigued. There was a spark of a different nature. That was the beginning!

Of course it would need to be the right connection between the THREE of us. That was the tricky part. But to my surprise, Evaristo was able to understand Jasan’s complexity very quickly. He was quite intuitive about him, which was a huge comfort to me, and a VERY GOOD sign. I had been scared for so long if I would ever find someone who would be able to understand the dynamic between Jasan and me. It’s deep and different. The way I parent is different, and it needs to be. I don’t have a typical child.

Not to mention, would it really be possible for another man to love my child as much as I do? Evaristo just blended into our situation with ease. So, after awhile of dating and trying to spend as much time as we could together within our busy lives, he asked me. On Christmas Eve 2018, we got engaged! I just knew it would be right. I’ve never felt that before.

Fast forward to May 25, 2019, and we had a beautiful wedding at my parent’s home. Small, simple and elegant.

As you know, with any blended family situation there are road bumps. We have had them, and will continue to, but I always feel confident that no matter what, we’ll persevere. Every time.

I write this post as an introduction to year 2020, but also as a new start to this blog. I felt as if this project came to an end years ago, but I can’t help but want to share everything as it is now. Growing up, new family dynamic, new year, new ideas. Time to start again!
My reason for writing has always been to be relatable. I feel that if I had stumbled upon something of this nature when I first found out autism was going to be a part of my life, these kinds of stories would have opened my eyes to another perspective. And oh my goodness, did I NEED that then! I strive to get the word out that autism is beautiful. It does not have to be looked at as a burden or a “disorder.” It is just a different way of life that is complex and extremely interesting.

I will never claim to have all the answers, but I know I can share my experience as a mom living in a life surrounded by autism. It’s the best thing that could have ever happened in my life. It changed the trajectory completely and in the BEST way.

I am so excited about my new website…many thanks to Monty Winters for his artistic vision and time. I am so grateful.

Hello again! It’s been a minute…

June 30, 2019 By Heidi Allen 23 Comments

**Jasan, now age 9.**
Photographer: Emily Sara

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. 😉

**Christmas card 2018 photo shoot at Menards. I know; strange location for a Christmas card, but…Jasan is still obsessed with appliances!** **It fits our family.**
Photographer: Emily Sara

**Christmas card 2018 photo shoot in the old apartment.**
Photographer: Emily Sara

**Yes, we have a shopping cart at home. Jasan found it by the dumpster in the parking lot of our old apartment** **and HAD TO HAVE IT.** lol..
**Christmas card 2018 photo shoot.**
Photographer: Emily Sara

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.

I’ll be filling you in!

Welcome back…

The Power of LOVE.

January 24, 2017 By Heidi Allen 6 Comments

My mind is reeling with thoughts. I am awestruck at a radio talk that I just listened to. [http://www.radiolab.org/story/diy/ : Second half]

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.

Interactions.

January 5, 2017 By Heidi Allen 3 Comments

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.

fullsizerender-3 — 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.)*

Diesel Ducy’s website YouTube channel Go give his channel a like! Why not. He has a huge following of dudes like Jasan.

Therapeutic Day School. REALLY.

October 31, 2016 By Heidi Allen 2 Comments

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.

Details…

FOLLOWING INSTRUCTIONS

Look at the person
Say, “Okay.”
Do the task
Check back (ask “Is this what you wanted?”)

ACCEPTING FEEDBACK

Look at the person
Say, “Okay.”
Make the correction
Check back (ask “Is this what you wanted?”)

ASKING PERMISSION

Look at the person
Make the request
Wait for an answer
If granted, say “Thank you.” If not, say “Okay.”

ACCEPTING REDIRECTION

Look at the person
Say, “Okay.”
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.”

REDIRECTION CONCERN

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

Other kids…

June 5, 2016 By Heidi Allen 2 Comments

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…

hurts.

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 isn’t sad one bit. Thank god for that.

Therapeutic Day School? Really?

May 17, 2016 By Heidi Allen 7 Comments

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. 🙂

Renewed.

April 26, 2016 By Heidi Allen Leave a Comment

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.

Drowning. — 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.

Happiness is back!

Just talk to me…

February 23, 2016 By Heidi Allen 8 Comments

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.

What?????

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 mean, seriously. Look at that face!