The problem with a label is that once it’s there, it becomes the main focus.
Here’s the definition of ‘label‘:
“a classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive.”
Restrictive. That’s the word. Once something or someone is placed under a label of sort, there’s restriction, followed immediately by underestimation.
Sadly, that’s an ever-present aspect in Kid1’s life and has been even before the ‘label‘ was applied to him.
Labels stick to you.
Once they’ve been exposed to an individual, they stay as the main focus in one’s mind, and everything to follow will be placed under that label; feeding the stigma and the stereotypes.
I’m far too familiar with these stigmas and stereotypes surrounding Kid1 and his diagnosis.
He was diagnosed with Aspergers Syndrome in 2017, at the age of five, due to his severe speech delay, difficulties to express and interpret emotions, OCD and sensory processing disorder.
Before we knew of all this, we had many challenges and difficulties to face, having no direction to go without any facts.
Even having all the facts didn’t make the journey easier, just manageable as we sourced information to help him in the best ways possible.
I had a traumatic birth with Kid1, with several complications; not being able to deliver him without assistance, the umbilical cord around his neck depriving him of oxygen and a race against time which could have cost him his life.
When we took him for his six month check up at the paediatrician that assisted in his birth, we were told not to expect much from him. That he wouldn’t develop emotionally, wouldn’t develop socially and wouldn’t achieve his milestones in the right timeframes as children should, because of the trauma of birth and lack of oxygen he received during birth.
This was the first stigma placed on him. A baby of six months, and we were told not to expect much of him. It broke my heart walking out of their offices, hearing those words, but needless to say, we never went back to them again. Maybe it’s an approach to let parents down easily, but where is the ‘but‘?
As time went on, he mastered his milestones within a good period of time, but speech wise, he was a little behind.
Over the years we’ve been to many therapists. In 2016, we saw a therapist who classified him completely autistic and said a special needs school would be the only placed suited for him, and we needed to move him immediately for the best results. I remember reading her report and finding so many contradictions to the little boy that I knew, and things she stated he couldn’t do – I had seen him do.
We didn’t follow her advice, but instead went for a second opinion. With the help of the teacher from his school, we found an Occupational Therapist to work with him on his fine motor skills, which needed attention. She did also tell us that she suspected a low form of autism but not low functioning autism the first therapist had diagnosed him on.
We found a Play Therapist in 2017 who diagnosed him with Asperger Syndrome. From there, the journey led us to a Speech Therapist in 2018.
We let him repeat Grade R to give him extra time to catch up with his speech as we were worried that he wouldn’t cope with the pressure of Grade 1 just yet.
When conversations turned to putting him into a mainstream school, we were advised against it; that he wouldn’t cope as the school isn’t ‘designed‘ to handle his ‘needs‘.
I had a meeting at a special needs remedial school, and the words used – system, label and inadequate – were enough to turn me away from the school. It felt as if my child wouldn’t be seen as an individual, but as a number.
I had a meeting set up later on the same day with a mainstream school, and after discussing his history and progress with the Grade Head, we were welcomed into the school, enrolling him immediately to start the very next week. The very thing that we were warned wouldn’t happen, happened.
At the beginning of the year, two months into the year, I was told to keep an open mind about Kid1 not making it in Grade 1 as the work load was intense and emotionally challenging.
Then 2020 showed it’s real face, and we were all challenged: emotionally and mentally. Guess what? Kid1 made it. He faced an emotional challenge none of us had ever seen before, and he adapted better than anyone could’ve expected.
Why am I telling you all of this?
He has faced being underestimated all of his life, because of his ‘label‘.
He has been expected to fail before even been given a chance to try.
It’s a sad reality, that from a young age, and still continuing, he will be second-guessed each step, that there will always be a stigma placed over his head because of his ‘label‘. Many will end up expecting less of him, because that’s what ignorance has taught them to do.
Stigma and ignorance will pass judgement in his direction.
Unfortunately, ignorance places a lot of blame on why the focus is on shortcomings and failures, instead of focusing of what could be achieved.
We raise him like there is no ‘label‘; we’re aware of it, but we don’t treat him differently. We don’t expect him to fail, we push him to thrive. We push him to work, and work through his problems.
We push through the stereotypes laid out before him, and while he is still young, he doesn’t understand how many people perceive him and I know we’ll have to worry about that smile of his when he’s older, when he understands more. I’ve read of people with Aspergers falling prey to depression and anxiety when they’re older because of feeling like outcasts, where in turn it’s their struggle to approach people and make social connections.
I cannot imagine a life like that for my son.
From someone diagnosed with both mental disorders, I will do everything I can to make sure my child, as well as the other two, never have to go through that pain.
We need to allow time for his weaknesses, and build on his strengths. We need to understand that different doesn’t mean less.
If there’s one lesson I can carry from these perceptions of others is that professionals can be wrong. Yes, they’re educated people, who know from learning from textbooks and scenarios, but they can be wrong. They don’t live with their ‘patients‘ to live through the reality of the triumphs and failures. They don’t always see the full potential of others, I believe because it’s the easier path. To accept and let go. This is what it is, and there’s nothing more.
I don’t and will never agree with that.
Anyone has the potential to achieve great things, when given the correct support, the encouragement and when we put our faith in them.
We need to focus on confidence building by showing our beliefs in them; helping build their confidence in themselves by showing our confidence in them.
We can teach them to be self-dependant by allowing them to make mistakes but always learn from them. We need to allow them to be who they are, without limiting their capabilities because the stigma says so.
Where they see Aspergers, I see a boy breaking social barriers.
Where they see a boy with a speech delay, I see a boy trying his best to communicate and has a love for reading.
Where they see emotional drawbacks, I see a boy learning to understand and adapt to the world that doesn’t see things the way he does.
I know there will be many people who cross our paths who will misunderstand Kid1, restrict his abilities by personal and professional opinions.
It angers and saddens me equally that there won’t ever be an end to this behaviour, and that it’s something I won’t always be able to protect him from.
I cannot erase all the ignorance of every single person, but I can educate everyone we come across to my best ability.
I cannot erase all the stigmas, but I can help crush it little by little.
I cannot erase all the stereotypes, but it’s my duty to my son, and everyone else affected by them, to change them.
For each one person that sees the ‘label‘ on him, ten see past it.
Those are the people he needs in his life. The ones that get to know him before forming any perceptions. The ones that treat him no different than the next child, because of his ‘label’. The ones that celebrate his wins with us, encourage him, share their pride. The ones that don’t ask me questions like, “Is he stupid?” because he couldn’t say a sentence in the correct order or express himself.
Those are the people that we all need in our lives; they fuel our fights against negativity and give us the strength to push through, push higher, push deeper.
Thank you to each one of you in our lives. Kid1 might not understand now how much support he has gotten from you all over the years, and I know it won’t waver. One day, he will know of the crowd that has had his back from day one.
So, next time you’re thinking of underestimating my child – don’t. Get to know him, see what he made of and what his capabilities are, and please, BELIEVE in him.
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