Let me make this clear – I’m not looking for a cure.

It seems that everywhere I look for resources on Autism one word keeps launching itself from webpages, books and well-meaning mouths: CURE.

Let me make this clear – I am not looking for a cure for my children’s Autism.

Are they getting therapy, yes. Are they getting tests done and making their doctor’s visits and getting all manner of things like hearing and vision checked out? you betcha. But it is not because I am looking to “cure” them of their Autism.

It is because I strive to make them the best people they can be.

Just like I give extra help for my daughter with Dyslexia. Just like I expose my other daughter to reading books that are higher than her grade level. And will be looking into speech therapies for my youngest daughter if her lisp persists. I am trying to give my children the tools to excel. To become the best people they are capable of. They do not need a cure. They need love and guidance individually tailored to their specific needs

By definition, Cure means to remedy that which is at fault

cure  (kyr)n.

1. Restoration of health; recovery from disease. My sons are not diseased.
2. A method or course of medical treatment used to restore health. My sons are both extremely health

4. Something that corrects or relieves a harmful or disturbing situation. My sons are not disturbed or harmful.

 

Are we talking semantics,  yeah, a bit but the fact of the matter is that even if my sons both develop into what social outlets describe as “normal”, they will still have Autism. They have just learned how to move through life closer to your acceptance level.

I get really annoyed when my sons display “Autistic behavior” and people want to make them stop. Especially when it’s not being harmful in any way other than to another individuals comfort. Because, let’s be really honest here, you don’t want to cure my sons, you want them to blend it, be “normal”, not interrupt you in public or make you uncomfortable in any way. YOU want to CURE my sons because you are not interested in acceptance. Or compassion. Or love.

You look at my son with disgust and contempt and put on a shining mask of caring that you hide behind as you search for your “cures” to stop your own selves from growing into true compassionate beings.

Will I stop helping my sons to be the best people they can be? No. But I also won’t force them to conform when there is no need other than to satisfy someone else.

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Its it just me?

Is it just me, or does Autism seem to be hitting the news more and more? Or maybe it just feels that way because I now have a keener eye looking for it? Like when you get a new car and suddenly you realize all the other people out there that drive the same one as you even if it’s a different color or year. And you feel excited to see someone else on the road driving something just like you but sometimes a little jealous theirs is in nicer shape or a little prideful because yours is.

Not that I’m equating Autism with cars. Well, not that much.

Has Autism been in the news more lately?

 

An unadressed letter

Next week, January 12th, my local Center for Autism and Related Disabilities is heading to the capitol to hand deliver letters reminding them who they are funding. They sent me an email asking for a letter and possibly a photo if I couldn’t come with them in person. CARD’s funding is cut year after year while ASD diagnoses rise exponentially. This isn’t just in our state of Florida but in all states. Consider writing your own letters to government or contacting your local government funded office to see what you can do to help.

Here is a copy of my letter, copy it if you’d like (change what’s not applicable) and email it in. I can’t really make it any simpler and you never know the impact you might have.

 

 

To Whom It May Concern:

I am the mother of five children. I take college classes at home on my way to becoming a teacher and educate my children at home. My husband works full time and is a Captain in the Florida National Guard. We’re regular people. Well, we thought so anyway.

On November 15th our youngest child was diagnosed with Autism Spectrum Disorder. While the news wasn’t a complete shock, the impact was still jarring. I didn’t know anyone with an ASD child. I didn’t know what this all really, truly meant for me and my son and our other kids. I didn’t know how to find the resources I needed to help my son. Time was ticking away for my child and I had no idea how to find the clock. I was scared, hurt, no…wounded. Hearing the word “autistic” felt like my world had crashed down around me.

CARD was there to help me pick it all back up. The 15th was a Tuesday and that Friday CARD had their monthly parent orientation. I was ten minutes early. I had spoken to relatives after the diagnosis and the conversations left me hollow and aching. I felt disconnected and disjointed. I felt alone. As I picked up the literature, was greeted with friendly faces of the CARD staff, I started to feel whole again. Listening to Margie Garlin explain how CARD worked and allowed me a glimpse into her life as an ASD parent, things started looking brighter.

Everyone in the CARD office was friendly, warm and helpful. The things I shared about my child and my fears, were met with kindness and understanding; something I hadn’t been able to find elsewhere. They offered me resources to help my other children and at a time in my life where we are struggling financially, the opportunities offered by CARD were life-saving.

I don’t feel that there is any other places in the country that offers what CARD offers. From the people they employ to the services they freely give, there is no comparison. To look at my son you would think he were no different from any other nuero-typical child, yet he is very different and there are too few resources available to allow him to become a meaningful adult that contributes to the world. With one in seventy boys becoming diagnosed every single day do not take away this service from them. This is an epidemic. Soon, we will have a generation with an enormous population disabled and unable to function in society. The small burden you may feel CARD has on funding right now will be miniscule to the explosive number of individuals that never received access to the services they so desperately needed.

Thank you for your time and consideration.

Sincerely,

It changes nothing. It changes everything.

Autism. It’s just one word. We can discuss Autism all day long, the signs and symptoms, if it’s environmental, genetic or both. If it can be treated or cured or just left to be. If diet, drugs or therapy will help. We can talk about support groups, funding, public education and screening.  We can debate the history, progression and societal impact. We can evaluate the merits of weighted blankets, melatonin and communication devices. Or hash out IEP’s and treatment plans.

Whether used as a noun, an adjective or a verb, it’s just a single word but when applied to a person it becomes so much more.

It becomes a child, partner, mother, father, neighbor, student, cousin, friend.

It becomes my child.

And in that sense, we can still talk all day long but there would be a new spin on things. Because Max, isn’t just Max anymore. Max is autistic. Max becomes “my autistic child”. “My child with ASD.” Because in order to understand Max you need to understand autism. And in order to understand my life you need to understand autism. And if you don’t, we can have that all day long talk, I’ll even bring the coffee, but it will be for nothing.

Everyone tells me that this diagnosis changes nothing. That Max is still Max and in that I agree. He is still my smart, funny little boy. Still my last child and by default my baby. He’s the one that takes little shuffling baby steps away and looks out of the corner of his eyes when he knows he’s in trouble. The one that raises his eyebrows at new things in an “I don’t really think so” way, even when he refuses to look at you. The one that strips as soon as his foot hits the house floor and sometimes sooner. The one that fidgets sitting next to you trying to contort his little body to mimic your exact position. It’s endearing, and makes me laugh. It’s also Autistic.

And everyone that I hear those words from, that it changes nothing, doesn’t have a child on the spectrum.

In a way it really doesn‘t change anything and in an even bigger way it changes everything.

It changes our days. Some days we have therapy, NT kids don’t usually have that. It changes how I deal with him. It changes how his siblings interact with him. How I have to question whether this is typical 3 year old behavior or if it’s his autism and he just can’t help it. I have to second and third guess why he’s doing what ever it is that is causing him to “misbehave” because he can’t tell me. I have to guess at what is making him shriek at the top of his lungs over and over again. I have to ignore the stares from onlookers while we’re out and tip toe around snarky comments half whispered from the onlookers that have big mouths. If you’re an ASD mom you know the ones, the ‘whispers’ that are loud enough for you to hear even over the shrieks. The things they want to say to you but are too scared to do it to your face.

And then the comments that you don’t hear, the ones after you or they leave but that you can see in their eyes if you ever meet again.

It changes relationships with peers, friends, relatives. It changes how you deal with insurance companies, vacations and schools. Your future is different because you need a fail safe plan if your ASD kid never becomes independent and you die. You need alternative means to communicate if they never speak. It changes sleeping arrangements, grocery shopping, clothes. It changes how we evaluate “safe” places and when and where we can do things, because sometimes, somethings just aren’t going to work for my autistic child.

It means that I spend an enormous amount of my time researching and learning how to care for my son. It means that I have less time for everyone else. It means that if I want something for him I have to go out and get it because no one is going to do it for me. It means that I get to talk about autism all the time to people that couldn’t give a flip so that maybe when they want to give “that look” or whisper when they see another ASD kid out there maybe they’ll think twice. It means the first thing I get to do when we move is look for ASD doctors and therapists in addition to horse back lessons and ballet for the NT kids. That the baby sitter I need to hire can’t be a flaky teenager but someone actually qualified to deal with ASD children or be willing to learn. It changes how much money we have and where the money we have goes. It means that other might have to change how they deal with us, coming here instead of us going there, not getting bothered when we don’t call or realizing that I’m not being unthoughtful if I forget something but that my thoughts are just too full. And listening to me use the word “autism” more than once in a conversation and not getting annoyed because, guess what? I’m an autism mom, now. It changes who I am.

Ignoring it isn’t going to change anything though. Telling me he might grow out of it or making ignorant comments about his development isn’t going to help. You can pray and hope and wish all you want, and by all means, please keep my kid in yours if you don’t mind. But don’t tell me it changes nothing because all you’re doing is making me feel that my feelings are petty, that all of these changes I have to make are meaningless, that I don’t have a right to my level of stress or helplessness or loneliness or overwhelm. That dealing with Autism isn’t a big deal and it tells me I can’t count on your support by belittling the enormous changes I actually DO have to face.

And for the simple fact that you’re wrong.