As most of you probably know, April was world autism awareness month. A month dedicated to educate and make the world aware that autism is indeed real and that the numbers of kids diagnosed are on the increase worldwide. All over the world everyone is “lighting it up blue”, releasing blue balloons, wearing blue, or pinning blue puzzle ribbons on their shirts, all for autism awareness. All over social media, autism associations and support groups share facts and quotes about the condition, how it affects families living with it and how to treat someone with autism. Usually I am in front of the queue participating, but this past April, I took a step back from the awareness part, as I realised that the dream I have for my son is not only that the world be aware of his condition, but that the world will accept him, the way he is, and not push him to fit into the normal box….
Five years ago, I never knew what this autism thing was, I knew it existed, but thought of it so much differently. I thought kids who have autism, were constantly rocking in one place, cannot speak, do not make eye contact, do not play, do not smile and are not able to function in this world, I thought of it as one of the most scariest things that your child can be diagnosed with, until it became part of my normal life.
While I am writing this blog post, I am watching Gian playing outside with his toys in the sand, running around with his dogs, jumping on the trampoline, laughing out of his stomach, coming to me, giving me a hug and a kiss on my cheek, saying “I love you mommy”, just like a normal boy of his age would. But unfortunately to the world he is not “normal”, he is not perfect, he does not fit into the box, he is different as he has autism….
We recently moved into our new house and while I was packing, I discovered my “Gian” file. With shivering hands and a lump in my throat, I opened this file, which I hid away for so long in the filing cabinet. Our whole journey played through my thoughts like a soppy television drama. For a moment, I relived every emotion, every fear and remembering all the tears I shed as I went through five years of many specialists assessment reports, MRI brain scan images, Dr’s reports, Psychologist tests, school reports, even the last Dr’s report saying: “Gian will never be able to read, we need to look at alternative methods to help him learn and put him in an appropriate centre”. All of them with one thing in common, Gian does not meet the “normal” criteria, every assessment, putting limits on his ability to function in this so called “normal” world.
I remembered when Gian was diagnosed with Autism end of 2011, I totally went into survival mode, I read up on this condition, I educated and dedicated myself to help my son reach his full potential. In the process, I over extended my own ability and burned out completely, and fell into that deep hole, where I never thought I would end up one day, called depression. During this low point in my life it luckily, or should I rather say, through the Lord’s guidance, led me to the most awesome psychologist at our church. During one therapy session, he asked me: “Tell me, how do you see autism?”My answer: “Very challenging???” Then he said something that stuck with me and changed my way of thinking about Gian’s conditions forever. He said: “Maybe you should see autism as a personality type and not a disability, because through God’s grace your son is more than able to cope in this world and be part of it, you just need to find his talents and strengths God blessed him with and focus on that.”
Suddenly my thoughts changed to all the many victories Gian achieved throughout these five years and the joy it brought to our lives. It all made sense to me, Gian IS normal, just a different kind of normal. Yes there is still a lot of stuff he can not do that normal kids his age can do, like riding a bike without side wheels, reading a book without help, or tying his shoe laces, but he has a lot of strengths God blessed him with. He can build a box of Lego in a record time, has a memory like an elephant, tell you about every animal species on earth , what they eat and where they live and he can do a speech in front of his class that will blow away your mind.
During this past week, I received a WhatsApp message from Gian’s remedial therapist saying: “Today was Gian’s informal assessment, he passed with flying colours. He had to draw a picture to go with the letter and he got all of them right!” When I got this message, I looked up and thanked God with tears in my eyes because friends, this is Grace…….I knew there and then, Gian will read one of these days, despite all the limits that were put on him, through God’s amazing Grace, persistence, dedication and his amazing team of therapists and teachers God picked out for him that believe in him with us, he will!
Gian was once diagnosed with autism, and it is part of our everyday normal life, but it sure does not define him nor our family. He is so much more than a diagnosis. He is a unique beautiful boy, with the most caring and loving personality. He is perfect to God and to me, I am super proud to be his mother! And he has this super power to make a difference in the lives of everyone he meets.
Like the poem written by Emily Perl Kingsley “Welcome to Holland”, our plane was destined to land in Italy, but our flight plan was unexpectedly changed and we landed in Holland. Very uncertain in a foreign country without a guide book, we had to learn to cope, learn a new language and culture, far away from the land we dreamed about, but we decided to make the best of it and enjoy the very special and lovely things about Holland. It changed our lives for the good, and although it is tough, it made us experience God’s unfailing love and Grace first hand and made us believe in miracles, as we see it every day in Gian’s eyes.
My prayer to the world is not to only be aware of autism, but to accept our beautiful and unique kids into the world, because if you look closer and try, you will meet and get to know the most awesome human beings, who are just a different kind of normal!
Our most awesome different kind of normal