For those who read my blog regularly, you know that I am mom to a precious 9-year old named Hannah. You also know that shortly before the age of 3 she was diagnosed by Dr. Stephen Camarata at Vanderbilt University with a severe mixed expressive-receptive language disorder. The simple definition of this is “impairment in ability to both understand and express language”. The specifics in the DSM-IV can be found HERE.
One of the early challenges I had in being Hannah’s mom, was dealing with people “diagnosing” her as being autistic because of her language difficulties – these were people in grocery stores, parks, libraries, churches, and anywhere else you can think of where people have no business (nor expertise) sticking a label on someone else’s child. Until today, I thought those days were behind us.
While about town yesterday, a person who “knows” me because of my work, but nothing more than that, said to me “oh, that’s your daughter, someone told me you had a child with Down Syndrome”. Wow, that’s a new one. I was not irritated with the person who said this, but with the person that gave her this information. I was greatly troubled as I realized that people are still “diagnosing” my daughter and sticking labels on her.
My little sweetie has made amazing progress. She is in 4th grade and struggles academically only with math. She is an incredible reader and can out-spell kids twice her age. Her ability to explain, define, and discuss a story or situation has improved exponentially. The subtle nuances of complex conversation is where she continues to struggle but she is growing and making strides even with this everyday. The other thing that probably sticks out to people is that she seems younger than other 9 year old kids. Because we homeschool, she is not exposed to the “hyper-aging” that society pushes on kids. I happen to believe that at 9 she is still a little girl and there’s nothing wrong with coloring, playing in the sandbox, drawing with chalk on the driveway, and playing with dolls. So, instead of talking about a “boyfriend” or texting pictures of herself in revealing clothes, she is talking about a book about Harvey the Great Lakes Whale, or about what Nell and Sophie (our dogs) were doing earlier in the day.To others this makes her “immature” (I think it’s age appropriate behavior), and combined with her communication challenges, they decide it adds up to a diagnosis that they feel compelled to make without even talking to me.
People should not diagnose anyone else unless they are a trained professional and that person has come to them for a professional evaluation. If someone wants to know “what’s the deal” with my daughter, they should ask me … I’m her mom, and I know every inch of the development road we have traveled, and honestly it is an adventure I love to talk about, as it is a story of God’s perfect timing and grace. Unfortunately, most people don’t really want to listen, they just want to talk without knowing the facts or the history of our journey. Even those who do say something, tune-out as soon as I start telling them about her diagnosis and the road we’ve traveled. I do grow weary at times when someone casually sticks a label on my daughter and then when I begin to tell them what the truth is, they either walk away or start a conversation with someone else. Sometimes I just want to scream: “hey, you just stuck a label on my kid without even knowing her, so now you’re going to listen to me!”. I don’t ever do that, because it would just be a lesson in futility.
I am feeling a bit like a grizzly bear this morning. I know my daughter has challenges. I know that she still struggles with the nuances of language. I know that she is “immature” compared to other kids who are 9, and that is as much a product of my allowing her the time to be a little girl and not rushing her into age-inappropriate behaviors, as it is her language disorder I know that she is sweet and funny and gentle. I know that she is sensitive and thoughtful. I know she is appreciative and thankful … she has never been a greedy, selfish child. I know that I am her mom because of God’s perfect plan, and I wouldn’t want it any other way.
For those who would like to read more of our story: