It has officially been 1 year since we received Monkey’s diagnosis. I remember this day like no other. I remember the doctor taking us through a long checklist of items and then explaining to us that Monkey exhibited many of the signs of Autism Spectrum Disorder. I know he said things after that…but I was in shock and did not really listen to anything else. In that moment everything changed while still remaining the same. Everything changed because in that moment the life I had imagined and planned was gone. At the same time, our Monkey was the same happy go lucky child she is. Looking back, I have to admit that this provided comfort.
After receiving the diagnosis, I poured myself into reading books, blogs, websites, Facebook groups and anything else to figure out what we were supposed to do. I am a planner and I needed a plan – I needed to “beat” this. In those early days if I am being honest, I looked at Autism as a problem that needed to be “fixed”. I know so much more now and I realize that Autism gives and takes like everything else in life. As much as I realize that our Monkey is more than autism, I also know that autism is what makes her who she is. She is autism and autism is her. There are good days, and bad days, highs and lows, triumphs and pitfalls, but throughout all of it I am learning so much every day. I am learning to see Monkey’s beautiful brain and her unique gifts.
There are also things that I would not wish on any other parent. The most painful part of autism for me is not being about to speak to my daughter. Not being able to hear all about the adventures and activities of her day, not being able to get an answer to simple questions like “what is your favourite colour” or “what was the most fun thing you did today”. Not being able to know what your child is thinking is torture. It is the thing that I hate most about autism. I would take every meltdown and sensory issue in stride if I could communicate with my child. I hope and pray every day that we get there.
At the same time, our little Monkey is working so hard. She is settling into school and a new routine fairly quickly in Kindergarten and the school staff have been amazing. They write us little notes about how her day was every day, and I cherish every word because it gives me a glimpse into what she can’t tell me. ABA therapy is going well, and she is conquering new programs and skills so quickly. Her therapists are amazing and even though we are going into debt to pay for it – it is completely worth it.
It has been one of the hardest years of our life as a family, but we came out the other side. I know that we have many more years of research, advocating and learning ahead of us but I know that if we can get through this first year we can get through anything. A year ago we were in shock and grief, but 365 days later we have hope – and that is the most powerful tool in our autism journey.