This September will mark the 9 year anniversary that my son Aydan was diagnosed with autism. This is not a day we celebrate. I remember everything about it, sitting in the waiting room at the Regional Center office building in downtown Los Angeles. A typical sterile office waiting room with a few toys and books strung around.. this type of environment would be a frequent scene for the next 9 years. When our name was called we walked in a large room with several toys, balls, puzzles, etc. and two women in business clothes. They were friendly, smiled and played with Aydan, attempting to interact with him. I was still in the phase of over-stating his abilities, as if somehow I could talk the ‘experts’ out of their inevitable diagnosis. They would ask questions, like ‘how many words does he have?’ Nearly 9 years later, I am asked the same question.. to which I continue not to fully know the answer.
When I heard the diagnosis, I was not surprised; I had already diagnosed him myself. I wanted the experts to stamp their seal of approval, so that all the powers that be would move us into action and bing bang boom.. we’d get this puzzle solved. I quickly learned, the system doesn’t work like that. When asking for help in ‘the system’ you must scream and claw and cite scientific journals and hire lawyers and argue evidence based vs. emerging evidence based vs. alternative and so on and on… This was certainly not the loving and accepting upbringing I had imagined for my child.
Aydan was 2 1/2 then and in the years to follow I would indeed make numerous mistakes in my pursuit for help. I remember the feeling of urgency, the constant reminders that this ‘window of opportunity’ would close at around 6 years old and the child would be too far out of reach to return. The clock was ticking and I moved fast.. Too fast as I should have seen then what I see so clearly now… A 2 1/2 year old child with autism, is a 2 1/2 year old child. We didn’t need the system, we didn’t need to move fast, we only needed each other.
9 years later we can do nothing about the mistakes from the past.. The futile fights with the system, the sterile rooms we sat in, the premature entry into school at age 3, the countless therapies that would follow, none of which were truly capable of addressing his needs. I understand the desire to stay positive and optimistic about the future. Certainly it isn’t prudent to continually beat yourself up about the past but personally, I have never appreciated the cliché sayings that make their way on many a Facebook meme, such as ‘There are no mistakes, only lesson..’ or ‘There are no mistakes, only opportunities’.. and possibly my least favorite, ‘There are no mistakes, only happy accidents…’ Interesting how I don’t remember being ‘happy’ during any of these events and I sure could have managed with fewer ‘opportunities’, especially at the expense of my innocent son.
Please, don’t get me wrong, I’m no pessimist.. I’m an optimist to the bitter end. Some might even say to a fault but the way I look at it, is that if a mother can lift a Chevy to save her child trapped underneath the vehicle, there is no “window” strong enough to withstand the rock I’m willing to throw.
Today almost 9 years has past and on paper we see all the milestones that have been missed, all the ‘opportunities’ that have passed, all the childhood experiences he’ll never have, which leaves me asking, what now? So, now I look back at that original day. I think of the sterile waiting room and I ask myself, if I had to do over would I have just taken those papers in hand and simply walked away from it all? Those papers that would brand my son with a label for life, enabling him access to all the ‘services’ within the system that never served his needs at all. Maybe I wouldn’t have even went into the sterile room.. Maybe I wouldn’t have even parked the car.. Maybe I wouldn’t have even made the initial phone call to get the appointment.. I mean what did those papers tell me about my son? What insights did they offer?? They state what he could and could not do.. what skills were age appropriate and which were delayed (most were delayed).. they would state if the delay was mild, moderate, severe or profound.. they would suggest which treatments were required, behavioral therapy, speech therapy, occupational therapy.. But did they encapsulate my son? Did they offer the truth? Could they measure his worth? Did they know his value? How much is your child worth? How many hours.. how much money.. how much time would you give for them… Could these papers provide answers to these questions?
Perhaps rather than look for answers from the powers that be, I needed to just look for answers from the powers within… The powers within us both.
So again the question remains, what now? Now I take the ‘lessons’ that I have learned and move forward. The first lesson being, I can’t do this alone.. I can’t take my 1000s of hours of research and out-smart autism.. I can’t use my intellect to dig just a little deeper, work just a little harder, spend just a few more hours and then expect the answers to be revealed.. What I do now is I stand naked and vulnerable and ask for divinity.. I was not raised with religion nor did my upbringing include many conversations about the spirit world or God but I know now there is only so much that is in control of man.
I ask for prayers and support among the readers who find this.. I ask for compassion from onlookers at the grocery store who watch my 11-year-old child thrust himself upon the ground when this world becomes more than he can take. It has become more than I can take too… I don’t give up.. No.. Never… But I surrender to the universe, I surrender to God and look for guidance. I ask you now, God if there is a window of opportunity and that window has closed on my son that you place the rock in my hand strong enough to shatter it to pieces… Please help me find the way and I will not let you down.
P.S. Thank you for your time and attention. Please support our campaign to raise funds for Aydan’s Son-Rise Program.