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I talk about Autism, a lot

Yes, My Daughter is a Total Misfit. Now Will You Help Her?

6/30/2015

6 Comments

 
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In the five short years that Kate has been alive I have found myself in countless meetings where my agenda has been to prove to the people around the table that Kate is disabled. I've been tasked with repeating over and over again how very delayed, and dysfunctional she is. I must do this to prove that she deserves access to services that can help her as she grows. 

I'm tired of explaining over and over why my daughter is 'not right' because I think she is beyond perfection.

It is taking its toll. So, please let me say here, what I would really love to say in those meetings but do not for fear she might lose access to a much needed therapy.

Kate plays inappropriately.

In what sense? So are you telling me that because she is entertained by things that 'normal' kids don't find interesting she is supposed to be dysfunctional? You know what I think is dysfunctional; that fact that every little girl this side of Montreal likes the exact same things and those things that they 'love so much' are delivered directly to them via mass consumerism and we all think it's 'Normal.' Guess who doesn't give a shit about all that? That's right; Ninja Kate.

Kate's communication is delayed.

She communicates just fine. You assholes are just not listening. Not everything is said in words. Isn't that communication 101? She does use a lot of words lately and she tries very hard to get them organized into the order you are expecting but when she can't do that, she reverts to other forms of communication. If you can't figure that out, then maybe you have a little delay yourself.

Kate perseverates.

You know who else perseverates? Pro athletes, artists, authors, scientists and anyone who wishes to become great in their field. Yes, right now she is five and she perseverates on Ninjas and Pirates but soon she may choose to turn her hyper-focus onto something else like, Social Policy or Politics or Medicine. (or maybe still Ninjas)

Kate hits.

It's a a very valid form of communication. How many times did she try and tell you something before she resorted to hitting? Again, is it maybe you with the communication issue?

Kate screams.

Again, perfectly reasonable communication when all else fails. Kids like Kate need their point to made quickly and efficiently when words don't work. This is a strategy, that although we don't love, we respect. 

Kate wears her hair short and plays rough.

What's your fucking point? She's beautiful and she likes her hair that way. She is not 'playing rough' she is sensory-seeking and she doesn't realize her own strength. Besides, she's forty pounds. Suck it up, buttercup.

Kate can't sit still.

Mostly, that is because her brain is asking her to move. Try not to scratch an itch and you'll get a small taste of how Kate feels when she is asked not move. There is nothing wrong with moving while you learn. In fact, some people believe that moving is the best way to learn. I bet you're tapping a leg right now.

Kate does weird things.

According to who? The same people that let big business and big box stores tell them what to like and how to be? There's a reliable source.

Thanks for letting me get that off my chest.










6 Comments
Jennifer
6/30/2015 06:08:41 am

You are an awesome Parent! I wish you could get the support your daughter needs BY using these answers instead of the one size fits all answers that you need to use.

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Michelle
6/30/2015 12:45:39 pm

Love you - love your girls! I think you must be an incredible teacher because you understand these things on such a powerful level!

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Michelle
7/11/2015 06:11:20 am

Loved the article. I have a Kate and she has tourrettes. It has been very frustrating to get the schools to understand. We recently pulled her out and are putting her in private school. It is not always easy, but my heart goes out to all of the kids who don't have parents to stick up for them.

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Lizzy
8/10/2015 01:53:05 am

My life is filled with appointments with people who can't promise me anything, because there are so much cost cutting exercises that really - the reality is, I will have to do it myself or pay.

So, my life is filled with researching the best diets, hobbies, ways to help your child de-stress, improve on their education, social relationships .... I micromanage and I HATE that I do this - it's exhausting and I'm not sure I'm making a difference or not.

I had an appointment today to talk about how things were going with my son and what can I say - I manage him - his life is happy (but never all day) because I pacify, control his environment and spend money on making sure he doesn't fall behind in school.

She made notes in her file and looked at me sadly... I know my son is not the worst autistic child she will review today - but for me, it's hard. For me, I want it to get better - can it?

I'm looking at essential oils this week and seeing if that can help him sleep or de-stress... as anxiety is a problem for him ... I've read a study that shows it can help and to be honest - I'll try anything to make his life easier.

I'm a solutions kind of person .... you have a hole in the bucket - put tape on it ..... I struggle that autism is like a colander and I'm not ready to accept that there isn't any tape ... that I just have to allow.... but I can't.

I've read research that tells me with enzymes in the diet - it can help reduce stimming .... so I buy probiotics ... am I being stupid constantly trying to find tape to fix ... or not?

What happens if we get to him being a teenager alone in his room night after night because he can't cope with going out as the noises scare him and I didn't do everything in my power now, before he gets that old, to pay for therapy sessions to reduce anxiety, to pay for yoga sessions, so that he can de-stress after school .... that I didn't do enough and he is a result / his unhappiness is because of me .....

Sorry to off load ... it's just lonely sometimes x

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Jess
9/23/2015 09:25:54 pm

So many of my thoughts were just spelled out so articulately. We have a Kate too, and it tears me apart to attend all those meetings to talk about what is "wrong" with her. Why can't we just accept ASD for the strange little gift it is? A lot of things are harder, but some things are easier, just in a non-typical way. What an adventure!

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Lauren
2/17/2016 08:53:39 am

This is how I feel as well, I have a three almost four year old son with asd and I am told I need to articulate how disabled he is to get the services I need yet I really feel inside that he is brilliant and unique and it really hurts my heart to have to think otherwise.

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