April is Autism Awareness Month and yesterday my newsfeed was filled with posts calling for acceptance of neurodiversity and contending that autism is not a disease, but rather a difference to be celebrated. While I support and cheer on each and every one of my sister-moms, to a large extent I find myself on the outside looking in because their experiences are not my experience. As my friend Laura rightly pointed out, “If you know one kid with autism, you know one kid with autism.” each of our journeys is unique.
This morning seemed like a perfect time to revisit something I wrote four years ago.
In a Facebook world where we share a status for an hour to show we care, there is something I want you to know about me. Being a parent of a child with disabilities isn’t just about the disappointment of altered dreams for what your child could become…although there is that.
Being the parent of a child with disabilities is also the heartbreak of seeing him not included; not because his peers are mean, but because they just don’t know how to relate to his world. It’s seeing friends move on and leave him behind and there is no one to get mad at because they are just growing up normally and your child is not.
Being the parent of a child with disabilities means making a thousand hard choices every day; sometimes in the blink of an eye. It means choosing carefully which hills to die on and accepting the judgement of friends and strangers because they would never make those choices and knowing that now they think less of you as a parent because their child would never act that way. I want you to know that I am acutely aware that your child would never act that way and that makes the world a lonely place sometimes because when faced with the choice of explaining my actions so you will like me or protecting her privacy, I will choose her privacy every time. It means knowing that in my fatigue I will sometimes make poor choices and it means asking her forgiveness and forgiving myself and moving on.
Being the parent of a child with disabilities means remembering that there are other children in my family who have needs too and making sure those needs get met. It means knowing full well that there is not enough of me to go around and trusting God to enable me.
I want you to know the words I dread most in the world are “You must be so ________. I could never do that.” I take them in the spirit of the encouragement they are intended to be, but I dread them because I know that I am not.
I want you to know that although my child has cognitive disabilities, he is not stupid and he is aware that he is not like other children. I want you to know that she feels deeply and her pain is real and her joy is real even when it is not something that would move you at all.
I want you to know that I celebrate small accomplishments and victories and that I know the value of a really good day.
I want you to know that the greatest gifts you could give me and my family are genuine love and grace extended freely, being included, being invited, and providing a safe place to be weak when necessary.
Four years later, I still mean every word. Four years later, there are a few words that I would add.
I want you to know that I have become quite adept at discerning true friends from those who are just polite enough to stay out of trouble. If you belong to the former group I want you to know that I owe you a debt I can never repay and I pray that God rewards you richly for your kindness. If you belong to the latter group, I want you to know that your condescending smiles and utter lack of room in your world for him are daggers in my heart. I know, I get it. He can be weird, she can be exasperating, you don’t know how to relate; but it still hurts…a lot…every single time. But I also feel sad for you because you are missing out. God has lovingly created each one of us in His image and He makes no mistakes. That means God made him the way he is for a reason. That means that if she is in your life, she has something to contribute to it. That means by dismissing him, you have missed out, in some small way, of seeing the glory of God.
To those who have befriended our family and included us in your lives, I want you to know how deeply I treasure your friendship; because I know we aren’t always easy to love. I know that your friendship has come at the cost of forgiveness and grace extended on more than one occasion.
Finally I want you to know, I want ME to know, there is hope. The mind is a mysterious thing and we are so much farther than I could have ever imagined four years ago. Life is still hard and there will never be any escape from that in this life; and some days hope all but disappears. But no one knows the future but God and He is good. I want you to know, I want ME to know, there is hope.