I am a Mother to 2 very special kiddos that are the center of my universe, wife to an amazing partner, fur momma to our newest addition Winnie and lover of life...and so lets dive into my first post.
THE HIDDEN DIAGNOSIS
We just got back from an incredible family trip to Disney World and it was amazing! We love Disney so, so, so much for all the obvious reasons, but also for not so obvious reasons. You see, our gift of a seven year old has an alphabet soup of diagnoses and allergies and is extremely limited to where she can travel. Disney offers the most incredible experience for her. There she has the opportunity to be just like other kids. their chefs are trained to accommodate her multiple allergies (dairy, soy and gluten), they have staff who are trained in ASD and know exactly what to do and how to interact with her and no one there looks at her as anything other than a princess.
But here is the thing, to the average person she looks "normal" whatever that means. She has no physical attributes that would suggest a disability. You might think that is advantageous, keeping it hidden kind of thing. Truth is I am on the fence about it. Some days I wish she looked a certain way so that I didn't have to explain her or her behavior. Its exhausting to always have to justify, prepare people, adapt, apologise and and and...exhausting. If she has the physical features of certain disabilities, then the narrative would be understood ( or would it) In our case, I also find myself often defending myself and my parenting. Because she "looks" normal we have been on the receiving end of some commenting gems ( how I am not in jail to be honest is a miracle) To the individual who doesn't know she lives with ASD and all that comes with it she can look like a spoiled brat. When she is screaming out of control because she is overstimulated, or hiding because she has anxiety, or almost in a trance from fatigue, to that individual it will look like a tantrum and a parent who indulges. Truth is, when the disability in internal and not physical it opens doors to comments, judgments and LOTS of advice. My all time favorite is anything that begins with " Have you tried..." or "maybe if you would just..." Oh baby we love that ( NOT!)
During our vacation, our stroller held the tag identifying her as disabled so she could enter through special doors, we often skipped lines etc. During this incredible program, that allows individuals to have this magical experience I had a few heart dropping moments when I heard comments like " she doesn't even look handicapped" ( I hate that word BTW) or "its not fair, she should have to wait like the rest of us" "This is bullshit, look she is normal" and a few others. Boy do I wish it was bullshit, boy do I wish I was just doing it so I didn't have to wait in line. ASD and many other disabilities and mental health are all unseen and can be as debilitating as a missing leg or spina bifida. I would challenge you to look at every person, every parent, every friend and coworker as if you understood that you don't understand everything, that maybe you are missing significant information to understand them and their behaviour. Maybe there is something more going on, be kind, be generous, be positive and supportive. There are many hidden diagnoses that affect individuals and families in ways you can never imagine.
Trust me. I know.
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