What does it mean when you label a person? Describing someone or something in a word or phrase is the very definition of labelling a person, right?
Let's talk about medical labels - at some point, we all have been labeled. One could be asthmatic, diabetic, allergic, etc. Our blood types are all labeled and it helps us later on in life if we ever need a transfusion, or perhaps surgery. The medical field has labelled children with neurological problems as Autism Spectrum Disorder, ADHD, Down Syndrome, etc. There is a whole bunch of medical terms that we hear of, and even accept as part of life's challenges.
What I don't understand is that, why is it so difficult for some parents to label their child "autistic"? Is it a form of denial? Could the label be a reflection of the parents' genetics? Are they afraid of the stigma for their child or themselves? Or are they afraid of being judged by others?
Who cares if your child has a label? Without the label, the child is denied of possible interventions and therapies that could prove helpful to the child in the long run. Without the label, the valuable help, therapies and respite care for parents becomes unavailable.
As a parent or a guardian, you end up on your own - fighting the battle that so many are fighting anyway. If you are just open enough to the reality of that label, your child will have better options and possibilities in life.
See, I have a child who was diagnosed with Autism Spectrum Disorder when he was 2 1/2 years old. I remember crying, frozen with fear and panic as to what do we do next. There were so much questions, and the answers were vague and unpromising, and attached to that label was a life sentence, not just for my son but for the whole family.
The doctor who diagnosed my child had obviously been doing this for a while. He was sympathetic yet he was firm and composed. He justified his diagnosis, and helped us understand what Autism is. He referred us to different specialists, and provided us with more resources.
He also noticed our reactions when he broke the news - the perplexed looked on our faces, the tension from our body language, tears flowing down our cheeks and the breaking of our voices spoke a lot. However, our wise doctor asked us one question that stayed with me forever - "Do you love him any less, now that you know he is autistic?" and of course, I knew right there and then that the answer was a big fat "no".
So, what does his new label mean? How can we better help him? As a parent, I felt helpless and defeated as I think of my poor child's future. The dreams of what my child could actually become, and what he could experience and enjoy in life were all washed away in that particular doctor's appointment.
Although I was thankful that we found out right away, and that there was a medical term to what my son was exhibiting, the river of emotions were marinating and boiling at the depths of my soul. While I was frantically trying to process everything in my head, I felt the need to control the outburst of all these emotions that I was feeling because I needed to be strong for my family.
Like other families, who first learned about their child's diagnosis for the first time, my family and I had to go through the grieving stage. I, particularly had the victim mentality. It was such a dark place we were in, and it was so difficult to find the light. I wanted to lead my family out to safety, but I, myself was completely blinded by his truth, his new label.
The self-pity for my poor baby, the constant exhaustion for the entire family, the idea of putting our finances at work, and the guilt of having big brother take on a huge responsibility of helping us take care and understand his baby brother's condition, the fear of our bleak future were all constant in my mind. It was too overwhelming, I had to isolate myself.
It was a difficult ride, but I must say it didn't take too long time for us to accept our new reality and embrace the cards that life handed my family. We picked up the pieces and dusted all the fears and apprehensions as we realize no one else will do it for us. Eventually, we learned to adapt and move forward.
Now trust me when I say that if your child is fighting this battle, you and your family will be in a rollercoaster ride - emotionally, physically, mentally, financially, socially, etc. All aspects of your lives will be affected. When you think all is well, like a sudden switch your child might be on a verge of a complete meltdown or an aggressive behavior. You may feel discouraged and defeated, and it won't be easy to stay positive and focused, after all, we are only human. We get tired, too.
But there's always a choice. We could either sulk in misery and self pity, or stand up and help fight our child's fight.
Remember your whys. Be strong and bravely trek this journey. Your creativity, resourcefulness and resilience will all blossom because of this fight. But more importantly, your faith will keep you grounded and connected to whatever higher power it is that you believe in. You have to trust that what was handed to your child and your family is something that you can all rise above.
For me, labeling my child meant getting the help that he deserved. There was nothing negative about it, where I need to be ashamed of my own child. I am actually proud of my son for he is fighting a long, hard battle with a heart so pure and innocent. He brings so much joy and inspiration in our lives.
And so we continue to fight his fight, and encourage our child to learn and do what he can do so he can be a part of the community, so he can continue to inspire and make people smile in his own special way. His best may not be enough for others, but for us it is, as long as he's trying in his own special way, and that he is happy. He is fulfilling his purpose in life.
It is my hope to open the eyes of parents and guardians. Don't be too scared of your child being labeled (not only for Autism) with any special needs diagnosis. It is best if your child gets early intervention at the soonest, and you can only do this if you face the label and not think of it as a curse or judgement.
So if you suspect that something is off, trust your gut feeling and have your child tested. If you, as parents dwell on worries and denials, you are only hurting your child and depriving them of the help and resources they truly deserve.
Yes, autism is a tough life to embrace, but is it really a game changer? Do you love your child any less if they are not the typical or the perfect child you had envisioned?
Their battles are never easy, but we must never give up on your special needs children. So, I encourage you to make a conscious decision that you will be your child's rock, for that may very well be your special purpose in life.
Realize that the strength, courage and bravery to help your child is within you, if you only face the fears head on.
If you know someone or a family battling this fight, show some compassion and kindness. And if Autism is a part of your life, give thanks and grace for it is a sacred gift disguised as a disability.
Learn to embrace the sacrifices and challenges, and embark upon this journey. Some days are easier than others, but our love for our child will drive us to keep fighting his/her fight. After all, that's what love is for.
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