My Little Technology Monster so-to-speak #AutismAwareness

As we move further into the month, I am still talking about Autism Awareness because well it’s important alongside many other topics, but this is the one I am learning the most about this month with the recent DX of my son. Today, I discuss the technology addiction my son has always had and was easily confused in the beginning with an ADHD type of child.

autism awareness month

Aj has always loved electronics, video games could have easily ruled his world back in the younger days, ages 2-5. Then he got older, he learned about MineCraft and YouTube. Most days you will find my son in front of YouTube doing his research, as I like to call it. YouTube has become my son’s television so-to-speak, but he doesn’t just watch any old videos.

Aj enjoys watching videos that teach him something, that allow him to work deeper with his current loved video game, MineCraft.

The counselor, Aj’s Dad and I have all discussed this electronic “addiction” that Aj has and from time to time it had become quite the monster of his world, keeping him from interacting with his family on a more one-to-one basis. Then as time went on, I realized that Aj wasn’t using the laptop for the purpose of game playing, I realized he was showing a high level of interest in learning how to manipulate games or coding to make the game work in ways it wasn’t built from the “box” to do. It seems Aj has a bit of his father in him, his Dad loves to build computers and different things like that so it fits the mold of “like father like son” for sure.

In the past couple, almost three, months of having Aj off of medications, I have noticed that his brain is just intrigued by how things work, not necessarily the hands on building like his brother, but more so the “behind-the-scenes” of how things work and Aj gets it! Aj picks up on things that most of us don’t as it pertains to mathematics or how technology works. Aj seems to me to be that child who will grow up with a love of programming. Instead of doing what we had previously thought to be the right decision, keeping Aj from electronics, my ex husband and I have allowed the computer to be an open access item for him at both our homes. We have found in the past few months that Aj will not use the computer beyond a decent level of time, eventually Aj will bore of not being able to find just the right YouTube video for his needs and will see his family is interacting playing tag or Lego’s and want to join in with us.

I love that Aj is starting to take an interest in family life. I love that, while he isn’t as into the physical play like his siblings, he does take a part in it on a daily basis for a limited amount of time. Upon discussions with the psychiatrist who diagnosed Aj, she stated it is fairly common for autistic people to have a high level of interest in mathematics, and usually do end up in the field of programming. It seems we found just another area where Autism Spectrum – High Functioning makes sense for Aj’s diagnosis.

What are some things that your child just adores and makes you wonder why he/she is sooooo fixated on that area of their world?

 

What Autism Means to Me #autismawareness

April is Autism Awareness month. A time to celebrate, educate and learn to have more acceptance for those children and adults living each day in a world I know little about how to relate to. It’s difficult being a parent, I am sure, to an autistic child. From what I’ve learned thus far, it’s a broad spectrum and no two autistic people are alike.

autism awareness month

If you are an every day reader of my blog, you may have followed along my life in regards to my now seven year old son, Aj. If not, you can catch up, but there’s a lot there listed under Mood Disorder, but most recently Autism categories here on my site. Basically, about a week or so ago, my son Aj was diagnosed with Autism Spectrum – High Functioning. This diagnosis didn’t come to a surprise because for the past two and a half months I have observed my son, taken notes from his teachers at school and witnessed him in his day-to-day life. I already knew my child seemed to be showing more and more of the spectrum as time went on.

While Aj has undergone multiple diagnosis’s, we firmly feel he is on the spectrum. For years Aj has exhibited some autistic tendencies, as his counselor has called them, but never enough to get anyone to say “yes he is autistic”, while I didn’t need a diagnosis as a parent for I am constantly observing my children and adapting in ways to raise them, the outside world usually needs a diagnosis to work with. So here I sit and write about what autism is for me during this month to raise awareness of Autism.

When I called family to tell them about Aj’s diagnosis, they of course wanted to know the question many ask, “What does that mean?”

My simple explanation for what autism means for myself, my family and my son is nothing. Really all that autism means for us is that we have learned to have more acceptance and patience. You see, Aj really seems to think like a computer or a robot so-to-speak. Aj is highly intelligent, has amazing grade levels at school, but in a social environment he may show signs of awkwardness or uneasiness. Aj cannot pick up on all social cues like we can, Aj cannot handle sarcasm or jokes like we can, Aj may not always make eye contact but I have noticed he makes eye contact with me. Aj also has flapping of the arms with happiness or excitement as well as rocking that has appeared in the past couple of months when nervous or trying to cope with a scenario he may not be comfortable with.

Other questions that come into play for me as a parent are how I will ensure he is receiving the supports he needs at school for the social aspect of his autism, because it’s evident his grades are fine at this point, but as he gets older the social aspect of school could take a toll on him.

I am currently awaiting meetings with the school to work on a 504 or an IEP, so far it appears they are going to work with me on a 504, I am okay with that as a first step unless I am educated otherwise.

Autism … in my eyes …

For me, autism is simply another way of viewing life, being that I have always been an open minded person and parent, it’s easy for me to observe Aj and learn how he works, how he thinks, and what is going on as-he-sees-it. As my child has grown, and without medications blurring who he is, I have noticed that really Autism for me isn’t a disability per say; Aj has grown tremendously, he fixates on certain things that he loves doing but how is that harmful to him? Aj loves technology and he has also started to show a love of interacting with his family and his best friend who comes for play dates.

For me, autism is honestly more simple, at least at the high functioning state, than your average person I work with. For Aj his world is black and white; you do what you say, you mean what you say and life is fine. Sadly, that does cause a ruckus from time to time, because as a human we know there are sometimes where sarcasm comes into play or maybe we say “not right now” far too often, instead of no. It seems in society we tend to be non-committal and Aj requires a committed reply and answer at all times. Aj thrives on a structured environment, he goes by the clock with any electronic time, play time, diner time, getting ready for appointment times, etc.

Autism hasn’t changed our lives in a bad way, it’s opened our mind, heart and soul to love deeper, more unconditionally and has helped us have a better bond than most families I witness. For me, Autism simply means love. The love Aj has for those who are close to him and the love we have for him is stronger and so unconditional that it honestly warms my heart.

My advice to those who don’t know enough about Autism, is to ask questions without judgement. My advice to those who do know about Autism and may be told their child will never lead a life like “every other person”, keep hope and Faith, work hard because honestly no matter what disability your child is diagnosed with, the hope, love and Faith from their parents can make a world of difference in their future!

And so I remind you this month, it’s okay to ask questions about Autism, but it is not okay to judge an autistic child by the book, they are so much deeper than what you see on the outside, just like every other person in this world!

You Need to Separate From your Son

Prior to the diagnosis of Autism this past week, we met with Aj’s counselor. I say Aj’s counselor but really he helps my ex husband and I to move forward with Aj and occasionally he does play a game to interact with Aj, overall he is more there to ensure we are keeping up with the parenting techniques that work for Aj. While I will tell you that I would highly recommend Aj’s counselor, I was left feeling jaw dropped at an appointment we had about a month ago.

Here’s what happened…

On this particular visit the emotional connection between Aj and I was very prevalent in the room. The counselor noticed it, my ex husband noticed it and of course I noticed it. Aj was having a rough time this visit and needed to have a time out, a time out with Aj usually means to-be-restrained, because usually he will not handle sitting in a time out without the basketball hold restraint. It took everything out of me emotionally to watch as my ex husband restrained our son, I don’t like it. I always feel there has to be another solution to working through Aj’s frustrations with communication or redirection.  Yet I do realize restraining had become the only option up until that point because of the medications messing with our son.

This restraining situation is what pushed the next topic in the session …

The counselor told me that I had to separate that emotional connection I have with my son, because as I spoke about Aj tears began to form in my eyes, my heart was breaking for my son as I spoke to the counselor. Mind you, this was before the autism diagnosis and I was simply starting to feel lost, as if we would never find a good solution for my son to thrive. I understood what the counselor meant, but I don’t think he realized what I meant. You see, emotionally connected to Aj, means that we have this energy about us, we have this connection much unlike the connection I have with my other two children. While I love and connect with all three of my children, this particular connection between Aj and I is different, it feels almost spiritual.  I left that appointment feeling upset, angry and frustrated. I was upset that the counselor wasn’t really seeing that my emotional connection with Aj is more beneficial than harmful for my son.

Here’s what I’ve now realized about that emotional connection …

For one, I am the primary parental unit for my children, specifically with Aj I have been the one constant, meaning while he does have a relationship with his father and my fiance, I am the one who works from home, is here for all appointments and takes him to the appointments, goes to all events and is home 24/7 so it’s only natural that Aj has formed more of a connection or bond with me versus the type of bond he has with others he loves. Once I felt in my heart that Aj was on the spectrum, which happened within the past couple of months that he’s been medication-free, something changed in me. I started having more patience and I started being more aware of what works for Aj and I started to work with and for Aj versus trying to get him to adapt into what I felt he should be. While I am not that parent that pushes a child to be a certain way, I simply mean that Aj couldn’t adapt to the parenting ways that his siblings can, so I stepped back and started to adapt my parenting techniques to him. This decision to adapt to my son has made Aj thrive in ways he never has. In this past month I was able to convince Aj to attend THREE functions; Family Math Night, Family Literacy Night and The Library Arts Center Elementary Art Exhibit Show.

I would have never in a million years been able to convince Aj to go to any events. Aj has always been that kid who thrives on a rigid routine, when we arrive home from school there is no leaving the house again, without a fit. For me to use the emotional connection that I have with Aj as a way to gain trust in him to go outside of his comfort zone tells me that there is nothing wrong with the emotional connection Aj and I have. Aj is on the spectrum and he is going to be that connected to those who he has a bond with, plain and simple. If one were to try to separate that connection we have, it would be detrimental to his growth. Our emotional connection has allowed me to get Aj to go outside of his comfort zone, to try a few new things, to be open to the idea of small changes. While this is a lot of work using my words and tones to get him to come around and take part in extra events, I am willing to do that work if it means he is showing signs of advancement socially.

Aj didn’t last more than 30 minutes at Math Night, he only lasted 45 minutes at literacy night and the art show; but he wouldn’t have even gone into the van to leave just a few months ago without a fit of rage and me having to drag him to the van. To me, that is what our emotional connection has done for Aj. My emotional connection with my son and patient, loving, nurturing personality is what has allowed my son to thrive in more ways than he ever has in the past on medications. The gift of Mama’s love and encouragement has shown me that medicine isn’t always about popping a pill.

The Diagnosis We Received, Even Though I Already Knew

I have discussed my son Aj for quite some time now. Aj has been without any form of medications since January 20, 2014. Aj had been on some form of medications consistently since about age 4, he is now 7 years of age. These past couple of months have opened up a whole new child and a whole new opinion on what I felt was going on with  my son. I firmly believed Aj was showing more autism signs than anything else in the past coupe of months and we received confirmation from a psychiatrist that stated Aj is indeed Autism Spectrum – High Functioning. What does this mean? Well I am still researching it all but honestly it just means that now there is a better idea of how to work with the public school system for him because in all reality he is the same child I’ve been raising for 7 years, nothing has changed for us at home.

In the past autism had come up, but Aj wasn’t having “enough” signs for anyone to really look into it back then. Now that I’ve had this meeting with the pysch I am realizing there were more signs than we may have even been aware of, starting way back as a baby. For example, as a baby Aj never liked affection, he wasn’t that cuddly soft baby who enjoyed being swaddled nor snuggled. Aj was that baby who breastfed and when done eating was ready to be out of your arms. Aj also potty trained extremely late. Aj also had slight delays in speech. There are some things with Aj that he was delayed in but we found health reasons for the delay and the pysch said that is probably why no one really paid any attention, the variable of having a health reason made sense so no one questioned autism. Wow, what en eye opener.

One thing I have noticed, without anyone telling me, is that maybe most of Aj’s violent rages were not stemming from bipolar, as previously thought. Bipolar made sense, that is what Aj was having going on or so it seemed. Now that I have been observing Aj and working to adapt my parenting routine to the way his brain works, I haven’t had any outbursts from him in the ways of the past. I firmly believe that Aj’s violent rages or what appeared to be major mood fluctuations were actually pertaining to him not being able to verbalize what was going on in his own mind and me not understanding his dire need for a very routine, structured environment. Now that his home environment has been adapted to Aj’s needs, he is thriving and happy nearly all of the time! Aj now interacts with his siblings, he shows a strong family bond, something I hadn’t seen before. Prior years, Aj was closest to me, his Mama, but lacked that full emotional connection with his siblings or others that were a primary part of his world. As I’ve started to work with Aj these past couple of months, I have seen his emotional connections with those who he trusts grow!

Recent Autism DX For my Son

I must admit, when the pysch said out-loud that Aj is indeed “Autism Spectrum – High Functioning” I felt very blank. Even though I knew that was going to be the diagnosis, or at least had assumed and sort of hoped for because it was the only thing that made sense, I still felt blank. I felt sad. I wanted to scream and cry. Why? Well because this is now reality. This is now something I have to work with the public school system for student supports that he will require as time goes on. Right now, Aj isn’t suffering too badly from the way the school works but as each day passes I do see new things that really are signs he could go downhill if we don’t get a team together and figure a way to adapt his school days to the way his mind works.

In all honesty, I am having home school scream at me, but right now I must go through the steps in hopes that the public school system works for him because I don’t have a passion for home schooling my child. I am certainly the right fit Mama to home school my son if the need arises, and I always make decisions based on what my maternal instinct says is best for my children but I am not there yet. I will go through the steps with the school system and fight hard to see what can be done to support my son. As Aj gets older we are going to see more and more social issues with him; he never has been good with social ques, ever. Aj isn’t a child who gets into the emotional responses of people, to him it’s more about tones. So if someone has a steady, normal tone, then he doesn’t pick up much, if any, emotion behind it. If someone raises their voice, and that tone is more of a yelling it can send my son into tears.

As a parent it has been difficult to be aware of my tone and ensure that tone is proper but I think I am getting the hang of it. A firm, steady voice always works for Aj. A structured daily life, always works for Aj. I was even able to get him to attend a couple of school functions with his brother and me, something he never ever would have even attempted in the past. This shows me that whatever I am doing to work with my autistic son is actually working to better him, not make him spiral downward.

This is another journey to walk, but I am thankful right now it is a journey that is med free for my son!

Image Courtesy: http://nationalautismnetwork.com/articles.html/_/autism-treatment-news/autism-and-the-gluten-free-casein-free-gfcf-r1705

Doesn’t Matter the Label, Just Matters That I am Mom

The label that my middle child receives down the road as we venture into the path of a possible new diagnosis really doesn’t matter to me. Aj’s Dad and I have been raising the same boy for the past seven years so whatever label is placed upon our son really doesn’t matter as it pertains to anything other than giving us something to research better. You see, no one lives our life. No one outside of our home has experienced the real Aj.

With no medication interfering with Aj in any way positive nor negative, the school is starting to get a glimpse into what our world has been like for years with Aj. He’s either withdrawn and down or hyper and happy. This is why there is certainly a mood aspect to our son but there is also this other side of Aj where he shows anxiety, he is anxious about new things and anxious that life needs go to a certain way. Then there is that routine driven side of Aj and that mentality that once he has it in his head something is correct, there is no talking him out of it.

There is the side to Aj where you could tell him the sky is blue and if he is convinced at that day and time that the sky is purple, then the sky is purple. It’s that simple for Aj. Aj is a complex child yet also very simple. The real world rules don’t necessarily apply to our sweet Aj, he is unique and in some ways unique is a great thing while in other ways unique can get into the way of a public school child. Aj is starting to show me signs of concern in the public school environment, I wonder if he will ever make real friends, real long term friends. I wonder if Aj will ever have a life that is one that people classify as normal.

Then I realize … those wonders are my anxiety kicking in. As I watch Aj suffer with some anxiety symptoms, I notice my generalized anxiety disorder starts to chime in. It’s this emotional connection that Aj’s counselor has advised me to separate better with that keeps me wondering and worrying about things outside of my control. I am better at controlling my anxiety, after all I haven’t had medication for anxiety in many years. I have learned to fight anxiety and I will teach my son the same skills, as I have with my oldest.

Aj is a happy child, if anyone asks I would say he is compassionate with a huge heart but he lacks the understanding of sarcasm or snide comments. You see, with Aj you have to say what you mean and mean what you say because if not, he gets frustrated. Aj doesn’t comprehend sarcasm for the most part, yet there are a rare few moments that he actually may look at you after a quick witted comment and smirk as if he got it. Those moments are rare. For the most part, Aj is a child who needs people to say what they mean and mean what they say.

Aj cannot have people in his home environment that cannot be that person for him, it’s not easy. My daughter and his younger brother have worked hard and continue to work as a family to ensure Aj has a safe, loving home environment. That means far too often we have to bite our sarcastic tongue and say things the way Aj needs to hear them. While we find humor in sarcasm, Aj does not. In my mind, it’s not that difficult but when you have a tween daughter and younger sibling of a child like this, it can cause a ruckus from time to time.

I don’t want to deter my daughter and my other son from being who they are to their core, but I want to teach them to respect who Aj is at his core as well. It’s a juggling act around here most days. Whatever label Aj ends up with for a diagnosis, I am okay with that, because after all, I have been raising him for seven years so no matter what they say “he has”, reality is HE IS my son, always has been and always will. I will always be here fighting for him right beside him and encouraging him to move forward to lead a happy, healthy life.

As I do with my other children. That is my job. My job is Mom.

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