Autism Isn't The Problem

Did you just know that there was something just off that you couldn't place your finger on about your child from a young age?

Or maybe did you also already know that your child had Autism but no matter how many evaluations were given, it "didn't show that?"

BUT it seemed like everyone else including you, family, friends, teachers and medical doctors could see it in your child?

Yes Mom!!!!!!

I completely understand your frustration and have been there.

I know just how hard it can be to be the advocate but it seems like no one is really listening to your concerns in the medical field, but they do see something just not what we see sometimes or the majority of the time maybe? 

I don't know about you Mom, but it seems like getting a diagnosis for Autism was like fighting an uphill battle while constantly getting pushed backwards into pits full of sticky muck, not going ANYWHERE!!!!   Not being heard. 

It took from the age of 4 years old to the age of almost 14 for my son to get a diagnosis of high functioning autism. 

TEN YEARS of therapy.

TEN YEARS of different evaluations.

TEN YEARS of medication and some that he shouldn't have been on! 

Does this at all resonate with you as well?  

(THIS IS THE SHORT VERSION!!)

This story started in the womb and January 27, 2009 it became a reality that this beautiful little boy would have a rough start with life.  I recall in the NICU being told a whole long list of "could happens" as my child got older because he was born 6 weeks early and he had lack of oxygen to his lungs. 

When you are a parent sitting listening to a Doctor listing what could happen with development and long term health effects, it's pretty overwhelming but you think it couldn't be your child!

The main things I was told that could effect my child was behavioral problems such as ADHD. Another thing is mental health problems. Babies that are born early are more likely to have anxiety and depression later in life. Neurological problems can also occur when a baby is born too early, gross motor and fine motor skills.  Autism was also something that was brought up. Nope, that wasn't going to be mine. 

When you have just had your baby and your still in a state of shock seeing your child hooked up to things, you think "nope, not my child. My child will not be part of the statistics"! 

When my son was still an infant,  I started to notice some things and I thought that maybe he will just catch up on or maybe he just isn't social and not a very lovey baby right now. He didn't like to snuggle, at all. He pushed back and just wanted space. I actually thought it was me that was the problem for a while! What was I doing wrong? I loved cuddling but it just made him more anxious and fidgety.  It was clear that it wasn't me he would do this with. 

As he went into daycare, the teacher would let me know that he wouldn't really play with other children but would play by himself and if he tried to play with them, he was rough. It wasn't in a mean way or to hurt them on purpose mind you. I thought, well maybe its like that because he doesn't have siblings. But really, I had this guy feeling that it was because of that there was something that just didn't seem "right".  The teacher was just so loving and kind and showed compassion knowing that he was still young and learning what socializing was because being the age of 2 or so, this is just the start of knowing what being social is. 

About 4 years old he started to go to a church school preschool and that didn't last too long. We ended up pulling him because they though that something was mentally wrong with him! My son really wanted to play but didn't know how to play appropriately and it freaked an over protective parent out. The school asked us to get an evaluation done that was not even age appropriate. Of course, I knew that something still was off and I just couldn't put my fingers on it but he was not trying to harm people. 

The next preschool he went to was another church school and I was really apprehensive because of the last experience we had. I let them know what exactly had happened and they had such opened arms for him! After he was there for a while I asked them if they saw something that they might see as something a little off and they assured me that it was not off! But when one of them mentioned maybe talking to his doctor about the potentiality of Autism I started to look it up and I was mind blown! 

THAT was my a-ah moment! THAT was what my son had! I looked up the what Autism was and how early you can actually detect it! Those things that I was experiencing and seeing as an infant and even to the age of 5 at that time, was in fact Autism. 

Right away a doctor appointment was made and talked with his pediatrician about it and  was shot down immediately because "they cannot diagnose children that young with autism." I of course used my mom gut and did not agree. 

Once he started into public school that's when it really started to unravel. Kindergarten he was really having "behavioral" problems but in small groups or at home, I was not seeing that. In the back of my mind, I still knew it was autism but because a medical professional told me a child cannot be diagnosed at a young age, that was suppressed. 

First grade he had his first diagnosis at a Pediatric Nero logical Center and I spoke up about my concerns of autism. Again, I was told that it most likely was not that, but the possibilities of ADHD or ADD. Surprise, his evaluation didn't know anything about autism but ADHD and also a learning disability. 

You know, I ran with that for quite a while because I felt that no one would listen to me as a mom who knows her child. From first grade until 14, he had multiple evaluations and none of those showed autism which even his current teachers at that time were surprised and also his therapists. So why was it not being shown in the evaluations? I honestly have no idea.

Without getting into parental things, there were changes in marital status and what not, but my son for a few years when he was in a mood, he would start to destroy things (not when he was with me). Now when your child is on medication and its not working, a sure sign that its not working is when its doing the exact opposite, even if the dosage goes up. I didn't want his dosage to go up.......

There came a point to where he was becoming suicidal and started to not be good to his body. As soon as I found out, I flew into the state he was at even though it wasn't my parental time because when you are a mom, you are a mom 24/7! He ended up having to go into the hospital and medication he was on, was putting toxins into his body (again, not something I agreed on). So parents, when your kids are on medication for something for mental health, please please please watch them. 

He was able to get into a in treatment center and the days I spent there while he was in the inpatient treatment center, I could see how much better he was after all the medication and toxins left his body! He was more awake in the brain and he was more alert! I could see my son and not the zombie kiddo when he'd come to my house or on video calls. He was able to speak his mind and tell people what HE WANTED and he started to advocate for himself! 

I could see again, the autism in him though and so when there was a meeting with the doctors and a social worker I had requested another evaluation. I also requested my son to come live with me to get a mental break but that's a whole different story. The doctor that he was under at the in patient center was on top of it for the evaluation and agreed upon seeing his symptoms. 

So guess what? When the evaluator met with my son the first time, he called me afterwards to ask me a whole bunch of questions and he said for sure he does have autism! 

I was sitting in the car talking to him and I cried and cried because FINALLY FINALLY FINALLY something in the medical field saw it and NOW he can get the help he needs. He can get on the RIGHT medication and he can get on the RIGHT road! 

AND this mama heart can finally be calm after all of these years!!!!!! 

Short and sweet....

Autism is not the problem....

The system is the problem!!!!!! 

This was in 2022 and since then, there has been a significant difference! 

I am so thankful that first off, the hospital took my son OFF of the medication he was on so that the doctors and evaluators could fully see what this mom was seeing symptom wise.

and second, the evaluator didn't just push it off as just another evaluations and just another kid. He called me and sat on the phone for over an hour asking really important questions! 

This was the first evaluator that really took the time to do this! 

Moms, again, Autism is not the problem. 

If you are feeling discouraged, which I know is so easy to feel, do your research and get second, third and fourth opinions!

Be your childs advocate! 

They have YOU! They have you for a reason!

All of the things he went through could have been a voided though if the system would have just listened! Sometimes parents or moms do know whats best! Mostly when there's that guy feeling and that nurturer that has been there all along! 

Today he is a 15 year old boy that smiles and laughs more in the right environment. He socializes more. He speaks up for himself and advocates for himself! I couldn't be more proud of his accomplishments! 

It does make a world of difference when someone just listens!