This started out as a Facebook post and quickly flew out from my thoughts to my page, so I’ll make it a blog instead.
One of the most difficult things about special needs is when you hear, ” she needs to communicate and this should have happened a long time ago” about your child. Being a parent with a non verbal child is so much trial and error, it’s a lifetime of trying to figure out a puzzle that constantly changes shape and there is no reference picture to draw insight from.
It’s knowing there is a key, and it will unlock her world, but where is the lock, let alone the key?
The path to traverse is as vast as an ocean and you rarely see land on the horizon, but you know it’s there, you see glimpses of the path on the map of your child’s face. You see her determination, her strength, her intelligence, her desire to share with you. You feel helpless when you reach a dead end and have to rethink your course.
You kind of live in this state of looking and trying and doing your best, but it’s never enough. There is so much more that needs to be done, but often you think, what the hell is it? You rejoice at the improvements of your child, but you cry with a bittersweetness when you try something new and it works and you realize if you had only had this knowledge years ago, perhaps she would be so much further along.
I am aware that I am only human and there is only so much I can do, however, it’s not about me, it’s about her and she deserves the best of everything, including the best of me.
Often people comment on my abilities as a mother, how I am “loving, great, amazing, etc” as a mom, but as much as I appreciate their love and admiration, it’s not about me. It’s about her. She is in a body that is out of her control, she has to work so hard just to do a shadow of the movements that she wants to do, but she never, ever, ever gives up. Ever. It might take her 5 minutes to lift her arms so I can place her tray, but she works hard to be independent and does it so I can place her tray and she rejoices at her accomplishment.
I hope people can look beyond me, beyond her body, and see the little determined, amazing soul that she is. It’s not always easy, she can’t control her body enough to interact in a typical way. It can be uncomfortable, awkward even, when you talk to her and she doesn’t immediately respond as she processes who you are (many people expect her to smile or say hello when they meet her for the first time). She needs time to process you , what you say and how you fit into her life. She needs you to speak clearly and slowly and look directly at her at her eye level. She needs you to show your warmth and maybe hold her hand as you greet her and tell her who you are.
She needs me to figure out how she can have a dependable and clear way to communicate back. She needs her team, both private and school based, to help with this process. There are wonderful people in her life who believe in her abilities and are working hard to help her. My prayer is that we help her sooner than later.
She deserves the best from the world, for that is what she gives the world.
I am here to help her. Always. May God help me.