If someone had told me when Avery was first diagnosed with Autism that she would still be non-verbal at 4 and a half I wouldn't have believed them. After all, before this all happened, she HAD words. She HAD gestures and social skills.... I was CERTAIN that it was just a matter of time before they came back. Boy was I wrong.
I remember struggling when I would see neuro-typical kids doing cute and normal things, responding to their environment, to their parents, and participating in daily activities. My heart would just sink. I was sharing that with my dad at the time and he advised me to stop comparing... and if I had to compare, to compare her to other children with Autism... because he, like me, assumed she was high functioning, and only mildly impacted. In fact, when we first went to the neurologist and the developmental pediatrician, they were both reluctant to diagnose her... then by the follow up visits they both said "PDD_NOS" or mild Autism. Now we have a "moderate to severe" case. So we were gradually eased into this world of disability. And even though we have ALOT of therapy and routines in place, at times I still feel like I am drowning. Some mornings I still wake up and can't believe that our life has turned out the way it has. I can't believe that after the tens of thousands of dollars spent, prayers said, and therapies tried... that she is where she is. It is mind boggling.
I have written time and time again about finding the silver lining, about focusing on the positive, about altering the way we think and perceive our situation and about the beauty of disability and the light I STILL see in my beautiful daughter's eyes. And I still stand by those posts... but it's also important to share that even when things don't necessarily "get better" that we are still able to march onward. To find happiness and hope within the precious moments even when the whole thing seems agonizing and unfair.
I wish that I could tell you that I have figured out how to completely let go of the "what if's" and the "why me's." I haven't. It still sucks, and as my sweet non-verbal four year old gets older and bigger, I fear that our challenges will only get more difficult and complicated. I guess I am glad that I didn't know where we would be today when she was first diagnosed with Autism. And the truth is, I don't really want to know where we will be four years from now. Having hope and optimism is part of what keeps me going. I can appreciate the smiles, occasional gazes, happy sounds and simple attempts to communicate. Things could always be or get worse... but thankfully we have an army of supporters to lift us up when times are hard. To remind us that we are loved, and I know that we are.
The lessons I continue to learn about myself, about the love and generosity of others, about the strength of a heart and the importance of compassion and endurance are what enable me to keep getting up day after day and working hard to help my daughter. I accept that she has Autism, but I haven't and won't give up on her. I once heard a mom say that if all her son could learn to do was ride a bike, then she would help him be the best bike rider he could possibly be. That's how I feel about my sweet Avery Grace... whatever she can do, I want to help her do it as well as she can. Whether she ever talks or not.... I will figure it out, and I will empower her to be all that she can be. I will make sure her voice is heard... even if you never hear a sound.