"Aren't they lucky? They get to live in their own little world. They don’t have to be bothered with what is around them like we do… It must be nice!"
WHAT!?!?!
Yep, that is the response I got during some small talk from the cashier at Star Bucks this morning, after learning I had a daughter diagnosed with autism.
I am sure she wasn’t a complete idiot, because she quickly registered the face expression I had and I am sure I was glaring at her with all the bottled up contempt I have felt for the past five years. She abruptly started talking about her autistic nephew and how he eats toilet paper and how you cannot talk loudly around him… somehow sharing her story was supposed to make the sting of her comment go away.
Was she just trying to relate? I don’t know, frankly, I don’t care. Here is my take…
Firstly, I am not going to sugar coat this… This will have graphic language! I often pride myself on being heart-centered and helping others focus on the positives on this difficult journey… sometimes I think that a small glimpse of hope is what parents on the spectrum need to hear and I made that my mission… to inspire, educate and offer hope to mothers, fathers and siblings… but today I am setting that aside to let others (on the other side of this spectrum) know the nightmare we live!!!
Like it or not this is the attitude of many people in our communities. They see our Children and they have the outer appearance of neurotypical children, so there is this misconception that these kids are well. In fact, I think that many people that are directly affected by autism have this attitude as well. (Grandparents, aunts uncles, friends, ministers, therapists, teachers, neighbors…)
Another woman once invited me to participate in a fundraiser for a local camp for kids with ‘serious illnesses’. So, I asked if they had services for kids with autism and her response knocked me off of my seat; this camp apparently was designed for kids who “suffering with serious illness”.
You know serious illnesses like asthma, arthritis, cancer, heart disease…. NOT AUTISM.
It isn’t like you’re dealing with cancer or a debilitating disease, right? Well, sometimes I think THAT would be easier… your fate is presented and there is a clear cut plan of what to do. In many of our cases, we have to go through life guessing what is going to work best of our child, because no one has a fucking clue what to do with them.
No one is doing unbiased third party research… because no money is to be made.
No one is advocating for action against the discrimination they receive from insurance companies… because it will cost too much to treat.
No one is planning for their future… because they don’t acknowledge that this is a disability and it will affect them long after the parents are gone.
The day to day challenges are dismissed as behavior problems… no one sees that it IS a serious illness; you know a medical condition….
Yes, Autism is a medical condition that prevents my child from wanting to wear clothing… no amount of coaxing is going to solve that over night!
It is a medical condition that prevents my child from having functional speech… can your child tell you if someone sexually assaulted her… mine can’t.
It is a medical condition that causes her to not have interest in what the kids outside are doing… she is not in her own world Miss Cashier she is isolated in a medical condition that won’t release its grip.
It is a medical condition that gives my child the never ending need to complete an entire cartoon episode or movie scene before she can lie down at night and sleep for a few hours before waking up because, well, I don’t know why she wakes up…. She can’t tell me!
It is a medical condition that keeps me up at night worrying about her future… will she go to kindergarten, college, get married, or have kids??
It is a medical condition that makes me call people and say don’t name my child in your will… that would really fuck up her services and treatment plan!
It is a medical condition that prevents her from sitting down with us to eat dinner… missing out on our conversations, laughter, and bonding.
It is a medical condition that makes her crave the same foods presented the same way every day… and, yes, even string, toilet paper, and dirt.
It is a medical condition that prevents me from getting a job… I have to take her to Occupational therapy, Music therapy, Speech therapy, Physical therapy… to the neurologist, geneticist, psychologist… the appointments never end.
It is a medical condition that creates fear about what will happen to her if I die… so; I have just accepted that I cannot die… I must out live my daughter so I don’t have to worry about what will happen to her, because it kills me inside to think about her future. No one in my eyes is qualified to take over.
It is a medical condition that mandates my other daughter to be put on the back burner too often…will the create anger, resentment, or rage?
It is a fucking medical condition!
No, my daughter isn’t lucky to be in her own world. I know she looks like a normal 5 year old in the cart as I push her through the rare trip to the store, but I work daily and, often, through the night at figuring out how to pull her into our world.
I want to know what she thinks, loves, knows, remembers, cherishes…
I want her to be a part of my world, her sister’s world, her father’s world, THIS WORLD!!
Posts
AlternaMom,
ReplyDeleteYou are not alone in this unfortunate experience, sadly. We really should talk more. People do need to hear what you, I, and so many others are saying ! My autistic life has not been easy, and I would have to credit law school (autism language boot camp) for most of my ability to communicate now. But I am still like Carly -- locked in because I can only communuicate thru computers and not paper and usually not telephones. Communication is not my only problem, either, not by a long shot. My list of autism problems and issues would go on several pages. I do think there is a major lack of understanding that autism is a medical condition. Notwithstanding Ari and Michael Bucholtz, autism IS a disability and it really hurts people with autism to say otherwise -- just for one of my autism problems, how my extreme hearing oversensitivies and dysintegration with loud noise is not a "disability" I will never know. People also need to understand autism comes with some enhanced abilities. They don't understand autism is a paradox -- the abilities and disabilities ARE the medical condition and can exist at the same time in the person. As I said, my autism problems (not even the issues it has caused) can go on several pages. I have received the type of comments/attitudes you went thru this morning. It does make you mad, because they just like to dump on people who are already dealing with a LOT -- autism. Good blog post !!! Anytime you want to e-mail me and talk, if ever, about anything autism, please do ! I think my Mom did a lot of right things with my autism that helped me, before all teh fancy things they do now. My e-mail is: ponyhunterjumper@yahoo.com. Take care !
~EquiisSavant
Thank you so much for your comment!! I agree whole-heartedly that autism is full of Abilities and DisAbilities... a complete paradox as you put it! I have been blessed with many things in my life as a result of autism... developing connections like ours is one of them. MY list could have taken all day to compose, I suppose I just picked a few to express... the auditory processing is huge for my little girl too. How old were you when you realized you could facilitate speech through typing? I think that is awesome... my 5 yo is still learning her ABC's but having a daddy as a technology geek, that may be a tool we could utilize in her future.
ReplyDeleteMany Many Blessings to you!!
Susan
Susan, you have brought to the fore one of my (and I'm sure any parent with an autistic child's) fears....that of what will happen to our beloved children when we die. It is the one fear out of all the complexities I have with my son that I dare not think about for too long. It made my eyes prick with tears that you feel the same way...that you simply cannot die before your child, because no-one else would understand your child's ways. If we lived in a society today that actually accepted and adjusted to the ways of ASD, perhaps we would no longer have these fears.
ReplyDeleteI also agree that however well-meaning, our family and friends also have a 'clouded' vision-my Mum is determined that my son will live independantly when he is older (he is 12) but I have, I feel, a more realistic view that will never happen-it is not a depressing view, it is a realistic view.
BUT my son is an absolute ray of sunshine, and brings a lot of love to me and those around him, so this is what I focus on.
Love to you and your family
Lynn x