August 20, 2014
There are a list of things that people say about Keller when they hear that he has autism, or when they watch him and try to reason how it’s not that bad. One of the worst is: “He is fine.”
People want to tell me that Keller is fine for a number of reasons. Possibly they don’t understand what autism is so they don’t know that the ‘cute’ things he is doing are really markers of special needs. Possibly people are trying to make me feel better and want me to know it’s not ‘that bad.’ Possibly they are uncomfortable with special needs and so they want to make themselves feel better about Keller’s situation.
I want you to know that it is not helpful for a parent of a child with special needs to be told “HE IS FINE.”
Keller is NOT FINE.
Keller has autism. Keller’s language milestones are ONE YEAR behind where they should be. Keller cannot go to the grocery store without melting down. Keller will not sit at the dinner table to eat a family meal. Keller can’t sit in our church for an entire service. Keller is not fine.
And that is OKAY.
Everything doesn’t always have to be fine and okay. Sometimes things are hard.
When you tell me that Keller is fine, instead of making me feel better, I feel like you are trying to minimize the issues we are facing, and thus I feel alone. I want people to enter to battle with me. To celebrate the milestones and to cry when it feels too tough to handle.
Today one of our favorite Ocean View families sat at our house for thirty minutes watching Keller eat a cup of yogurt on his own and then counted and chatted about the letters of the alphabet. They were amazed and cheered on every little step. This makes my heart deeply happy. My son is 26 months old and so should be using sentences now and running around eating everything in sight and he is not. But what he is doing is being celebrated and as he grows I love when people come into the journey.
For all those of us who are going through a time that ‘is not fine,’ what we need is for you to enter our ‘not fine.‘ We don’t need you to minimize our ‘not fine’ or even to blow out of proportion our ‘not fine.’ One thing is very ‘not fine’ but the rest of life is probably pretty good. So we can talk about the ‘not fine’ or the other things that are super fine. But the ‘not fine’ is NOT fine. Make sense?
So now four months into Keller’s autism diagnosis, there are so many things that are fine, good, and even great. Kieren is excelling, I am loving ministry, Ubuntu Football is building a house, and our family is loving life. Keller is not fine and I sometimes want to talk about that but sometimes I don’t. I am thankful for those that enter our ‘not fine’ and have helped to make the rest of the world super amazing and wonderful. At the end of the day in the super great and the ‘not fine’, we most want to be KNOWN and LOVED right where we are. Thanks for those of you who do that so well.