As many of you know we have been on our journey out of autism for a little more than 4 years now. As soon as we entered it, without asking to join the club I may add, we wanted out. Autism is a condition that changed our world as we knew it, our hopes and dreams for our son were taken away in an instant. Without warning ,without a hint it was coming. We went from being happy parents of a beautiful little boy, anxiously waiting for our daughter to join us, to very sad and hopeless parents. We were lost and had not one clue what autism was, were it came from, but worst of all how to get rid of it. Autism was something new to us, something we were not about to embrace, I knew Alex was not born with this so I knew I could/would get rid of it. A little voice inside me told me I could change this, I listened to that voice and it led me to recovery.
I submerged myself in anything and everything I could to heal my son, diets, biomedical treatments, supplements, homeopathy, CEASE etc you all know the story. In this past four years many things have changed, Alex has made tremendous progress, he has also gained two siblings, Julie and Santi. Alex has gone from being non-verbal to speaking in sentences. It’s been a year since his language kicked in and we couldn’t be happier about that, it is something I had been praying for way too long. In this journey I’ve learned that the little things in life aren’t really that little. What do I mean by this? I mean that things like being able to speak, to walk, smell, taste, touch, feel, all those things many, (I included) take for granted are truly HUGE! Alex has taught me to appreciate everything I am able to do, everything I am able to say, he has taught me to appreciate life like never before. Because of him I am the great confident woman and mother I am today. I am much wiser, I know so much, I know things I never in my wildest dreams thought I would know. He has made me realize just how strong I am, how determined I can be, he has made me a woman I can be proud of. Seeing how much he has struggled along the way makes me have so much admiration for him, he has been through hell and back and yet managed to do it with a smile on his face, a smile that can move mountains, a smile I would and did everything I could to get back.
So lets travel back in time and go through something called an ATEC test, what is this you may ask. Well this is a test I did on Alex at the beginning of our journey to see how affected he was by autism. This test asks you questions about the child, things like: does the child respond to his name? Does the child use one word at a time? Does he look at you? Questions many of us have had to answer multiple times. The first time I took this test Alex had a very high score and let me tell you that this is the only test where I wanted him to flunk. The higher the score the more affected the child is so that is why I wanted him to fail. Two years into our journey I took this test again and Alex’s score was a 61, which was lower than the first test but still high in my book. On Friday while chatting with a couple of fellow warrior moms one brought up the ATEC again and I started thinking, “when was the last time I took one of these for Alex”. I went back through my notes on Facebook and realized it has been over two years, February of 2011 to be exact. So I said why not, I will do this test today. As I checked off boxes I realized my mood was a lot different taking this test then it was two years ago, I answered the questions so quickly I was done in no time, then it came time to see our score. Drum rollllllllll pleaseeeeeee : 16 a WHOPPING 16 that’s 45 points less, DEAR CHRIST SOMEONE PINCH ME! I was so happy, thrilled, excited, all sorts of emotions into one, I could have cried many happy tears but I didn’t. This was something to smile and cheer about, my son is so close to not being a candidate for this test and that my friends is exactly what I want.
So back to today and now, autism is something we have been talking about in our house for many years now. And well one day we need to tell Alex what autism is, which I am sure he knows already being that the kid is a genius and knows everything. We need to tell him this is his diagnosis and to be completely honest with you I have no idea how I will do this. Yesterday I talked to Julie about it, she will be four in July which many would think is too young to be told such things. But whoever knows Julie knows she is a very mature and smart little cookie, she is my daughter after all could’t and wouldn’t expect anything less from her. Julie has been to every school Alex has been in, she sees his classmates and wants to be part of his class. She sees kids just like her brother, to her they are just kids without labels or diagnosis, in her innocent mind they are her friends and cousins even. At Alex’s current school their is a little girl who follows Alex and his aide everywhere they go. Julie has grown to love this little girl, she says its her best friend, honestly I have grown to love her too. Julie doesn’t know what autism is so I thought I needed to tell her. I sat her down yesterday and asked her ” Julie you know how Alex doesn’t talk to you as much as you’d like him to? And how he loves his books and being in his room? Well he is the way he is because Alex has autism, just like ( girls name from school). Julie looked at me and said “autism mom, huh”. As I was about to start my next sentence I heard my husband crying, crying like I had not seen him do in a long long time. And when I man cries you know he is hurting inside, a pain that is so deep that crying is the only way to make it better. I hugged him and asked why he was crying? As best as he could he said it was because of the conversation I was having with Julie, I am sure he never wanted this to be a topic at our home. Sadly it is and we need to face reality, autism is on our lives and even when Alex completely recovers autism will still be a topic at our house, I felt that Julie needs to know about this and maybe will better understand her brother.
How I decided it was time to have this conversation: Yesterday I was invited to attend a presentation given by an adult with autism. I had a lot f interest and wanted to hear what this woman had to say. It was a very eye opening experience and this was exactly what I needed to take the next step. She said our kids need to know what is happening, she said she would have loved to have known many years ago what was happening to her. She found our about her autism as an adult which she doesn’t recommend for any of our kids. So I asked her what was the best way to tell Alex, she recommended this book she helped write. The book is called I Love Being my Own Autistic Self by Landon Bryce. She says this book would hopefully be a great tool, I told her Alex loves books and I thought and hope this will make this conversation go a lot easier. She told me to let Alex read it before I go into his room to talk about autism with him, she thinks Alex will be able to relate to the characters in the book, one of the characters even has a sister which I think it’s perfect. I truly hope this book will open the door to a conversation I have been dreading, I didn’t know if Alex was too young to know about this, or does he know already? I wouldn’t be surprised if he did, I’ve said it so many times not directly at him but he’s always listening so I am sure it’s time. I don’t know how he will react to it, but I am sure it’s time, Alex is so bright, such a go-getter, I know he will make the best of it, I just hope me and Luis can make it through the talk without breaking down. All I can hope for is that Alex knows he will always be Alex to us, the Alex we have always loved and will continue to fight for. A diagnosis is just that, a label that has it’s days numbered, everyday that goes by is a day less for autism in our house!