family · mamahood · mom life · new mama · special needs · toddlers

My son’s name isn’t Aspergers

Many of you have seen photos of my oldest son, Monster, and many of you have read posts in which I’ve mentioned certain aspects of our life with him.

But in reality, you don’t know everything.

Here’s what you don’t know….

Monster is a bright and loving seven year old little boy.

He lives up to his title of big brother, helping his younger siblings wherever he can.

He has a big imagination, he draws and designs on paper to apply it to his LEGO to build 3D structures.

He’s patient with everyone around him, but he’s slowly learning where to draw the line and understand when he’s giving too much of himself.

He loves helping around in the kitchen and even pretends to host his own cooking show where he calls himself a chef.

He has amazing ball skills, and we have heard countless times of his natural talents. He aspires to be a professional rugby player one day.

His smile lights up the room, and his eyes sparkle, and it’s easy to see when he is truly happy and when he’s pretending.

He’s very independant, and will work hard to achieve what he puts his mind to. When he doesn’t succeed immediately, he doesn’t become frustrated with the task at hand, but with himself because of his own failure.

In the few years of his life, he has overcome many obstacles.

He survived a traumatic birth, where he almost didn’t make it.

He went through being bullied by a teacher who instead of focusing on the problems at hand, treated him like an outsider in her class.

He has been evaluated by a few therapists because he struggled to understand and express his emotions.

A few years ago, he was diagnosed with Asperger’s Syndrome. 

This is where our homeschooling story started. I left my job and stayed home to look after him. Two years ago, he couldn’t keep eye contact with anyone around him. He couldn’t speak, and if he did, he spoke in two or three word sentences; those that didn’t know him struggled to understand what he wanted to say. Those closest to us were able to understand what needs he was trying to communicate.

With the research I did, and still do, to understand Asperger’s Syndrome better and find ways to help him, I’ve learned that we are truly blessed that he has a very mild form of it. While Aspergers can affect many different aspects; emotional, mental and physical, Monster only struggles with his speech delay.

Over time, he has learned to look someone in the eyes when communicating, but it’s not always the case (depending on how distracted he is).

He struggled with concentrating on the task at hand, but with routine, has learned when it’s time to focus and when it’s time to play.

He is able to communicate in full sentences now and I can’t tell you how amazing that is. While he doesn’t speak on the level that seven year olds are expected to, the progress he has made can’t be overlooked.

As parents, we sometimes wish our kids would just be still for a little while so we could hear the sound of silence.

It’s not the same when you have a child with a speech delay. You would do anything to hear them talk, tell you about their day, how they are feeling, what they are thinking. Each time he tells me something new, I’m amazed to know a little more about how his mind works. 

Before, he couldn’t tell us how he was feeling. Now he can express if he’s happy, sad, scared and even when he’s not feeling well. To know how your child is feeling is so important, because it’s the starting point to helping them.

While we can’t be sure if the Aspergers was caused by the traumatic birth as he was deprived of oxygen for some time, the therapist that diagnosed him doesn’t believe that’s the reason as she said it was caused by environment influences and not so much neurological.

Looking at his development from baby to toddler, he was on track with his milestones, and the problems only started once the bullying at his school was discovered. It was as if a wall was built overnight and instead of moving forward, he regressed drastically with milestones he had already partially reached. 

Whatever the cause, it doesn’t matter. It doesn’t take the diagnosis away. It doesn’t make his life easier. It’s one more thing he needs to battle with.

At seven, he’s already a fighter. He always has been. 

One of the first therapists we met with, the one that diagnosed him on the far end of the Autism scale and said we needed to immediately place him into a special needs school because that’s the only place that would accommodate his needs, also told us that he wouldn’t grow emotionally, would be physically weak and wouldn’t be able to socialise or make friends.

I remember receiving that report from her as if it was yesterday, and I remember the emotions I felt. The disbelief, the anger, the heartbreak. I read that report over and over, and I was convinced she had sent it to the wrong parent. The things she tested him for and stated he couldn’t do were some of the things he did in front of us. How was this even a possibility? I refused to accept it, and we went for a second opinion. I wasn’t going to just place him in a special needs school until we had explored all options.

I’m glad we did exactly that because the next few therapists we met with him gave the answers, the support and helped us understand and accept his diagnosis. 

My son’s name isn’t Aspergers.

We haven’t even spoken to him about his ‘difference’ and we’ll get around to it when the time is right, when he’s emotionally ready to understand it. We don’t wan’t it to become a label on his forehead. To tell him there’s something different about him that sets him apart from his classmates and doubt himself. We don’t want to put a label on him so that he believes he can’t achieve what he puts his mind to.

Every obstacle he has overcome to present day is because of his hard work. Yes, he might have it a little harder than his classmates with some aspects, but it doesn’t stop him from pushing himself to get things done. Socially he has grown tremendously and it’s always great to hear who he played with at school and what they did. He has his few friends at school whose names come up in conversation and you can see the joy radiating on his face when he tells me about them. The therapist that said he wouldn’t develop socially, you were so wrong!

While the journey with his speech delay is far from over, what he has achieved so far is insane! From nothing to conversations. From nothing to jokes. From nothing to being accepted into a mainstream school.  From nothing to being accepted into the school choir. From nothing to learning to read a short story within three days.

Yes. Aspergers might be the diagnosis on paper, but my son has a name, and it’s not Aspergers.

We don’t let him be defined by it. We won’t let it hold him back. And knowing that kid’s fighting spirit, neither will he.

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