Tuesday, April 9, 2013

Autism Awareness Month 4/9 - Name Redacted - Fan

I'm going to start today's guest post with an editors note. I received this on the first day of calls for submission and finally got back to the author last night. I simply did not know what to make of this submission. After great internal debate (and the go ahead from the wife... my ultimate editor), I decided to publish this. This voice comes from a mother and I imagine it is written to a family member or very close friend. I want to put this piece up for "discussion". Whereas it is angry in tone, unforgiving, and merciless, it represents something that all of us have felt at one time or another (probably not to this degree).

One of the things that I want to accomplish in the Autism Awareness Month guest post project, is to gain different, previously unheard, perspectives on autism. If you read my blog, I keep it pretty positive. It's not all sunshine and rainbows, but I don't blog about the really tough times. I keep those to myself.

I have a few more submissions that deal with things like this (raising teenagers, raising retardation, raising violence)... things we don't talk about, or are at the very least, under represented in our community.

So, feel free to comment (keep it constructive, please). This is an incredibly powerful, well-written piece.

Ladies and Gentlemen, I present Name Redacted...

Another call that makes me feel horrible. Doubt. I don’t understand your thinking. Why is it so difficult to understand that I make decisions not only for myself but for the family and especially for my son. You are aware that he has autism. You tell everyone you are supportive and help with autism awareness. You boast about all of his accomplishments…at least the ones you know of. 
In actuality, you don’t really know that much about autism or my family. ‘Did you watch that movie with that Temple woman? You can really learn a lot about autism if you watch it,” says you. Yes. I saw the movie, read her books, read tons of other books on how siblings cope, ones that parents wrote and others that Doctors have written. I even have on-line courses and cds that we listen to. In fact, I have an entire library on autism and sensory processing disorder in my home. Would you like to borrow one? No? OK. That’s right; you know everything there is to know about autism because you watched that movie once. 
You go on and on about how I don’t let him do anything or get dirty or run around. I have told you way too many times that he is an eloper. He keeps running. Open areas are dangerous for us. Water is extremely dangerous because he has no fear. Get it? No fear as in he will walk to the edge of the cliff and possibly, keep going. He will walk into the ocean and not know when to stop….yes, I know, the lifeguard is there. Not good enough. Simple fixes right? You are full of them. 
Let’s talk about birthday parties or parties in general. Thank you for inviting us but we won’t be able to attend. Why? Too many people, it gets way too loud and you won’t allow him to go off into another room because he may touch something or break it. Remember? Don’t touch that. Leave that alone. Come over here. Stay away from that. Would you go get him? 
Remember that one time when he came over to you to ask in his way to play? Then you put your hand out and said no and looked away. I do. I remember. It hurt me to the core and it changed the way I look at you. You hurt me. You hurt my son. Haven’t you noticed how much we don’t communicate? Doesn’t it bother you that you left me no choice but to slowly turn away. I say it doesn’t bother me to people who witness it firsthand but it does because I don’t understand it. How can you be so cold. Don’t answer that because you’ll just turn it all back on me. It’s my fault you don’t see him that often. It’s my fault he doesn’t listen because I didn’t hit him as a baby. It’s my fault that you have a special needs family member and this makes you uncomfortable. You don’t know what to say. You don’t know what to do. Oh, how embarrassing for you. Do you know what’s embarrassing? You. You embarrass me. You make me feel horrible. You enrage me. In fact, I feel much better when I’m with my son so that is how it’s going to be. Have a good life with less of us in it. I know about autism. I am fully aware of his autism and I fully accept it. As for you, you need work. Lots of work.


  1. I can related to this. I have members of my own family who have done everything this person describes. We want our families to "get it." To truly be supportive. But oftentimes... they just aren't. And it hurts, like a knife to the stomach.

  2. I dont think this is so much anger as hurt, and it's very familiar to most of us. This is why we turn to each other. I don't know what I'd do without the autism community.

  3. Very well said, and a reminder to those of us who sit in the support role. It is more supportive to learn than judge. Thank you for your courage to remind us how to help.

  4. I absolutely love it!!very well said!!!

  5. it hurts me that they hurt so much. truly. yet, we understand this hurt.

  6. I can feel your pain it is all to familiar! It's made a difference in our lives to hear these stories and know we are not alone. Thank you for sharing!

  7. Beautifully written and true!
    I agree its hurt and not anger. I definately can relate to this!

  8. The flip side for the blogger to ask herself is --

    How many times did you cancel plans at the last minute? When is the last time you reciprocated an invitation? Have you spent the last six years not returning phone calls because your life is a billion times harder than anybody else's (according to you)? When was the last time you had anything nice to say about a friend's kid or your nephew -- you know the one your precious darling angel face with autism hit hard enough to leave bruises at the last four get-togethers / pulled her hair / destroyed his stuff /spent all night shrieking like a banshee at? My kid is pretty tolerant and accepting, but after the fourth get together with your little angel left huge bruises, she's not so keen to play with him anymore. Even if he is her cousin and has legit special needs. And I don't blame her. You doing nothing to stop your kid from harming others, willfully trashing other people's stuff, etc has consequences.

    Yes, having a kid with autism is tough. But the world doesn't revolve around your kid and you are totally out of line to expect it to. For the first 6-12 months after diagnosis? Sure. But after that its a fact of life. And the fact that you never visited your BFF (of 20+ yrs) when she was hospitalized for chemo or did *anything* to help out when your elderly parents broke a hip (and your siblings carried the ENTIRE burden without a whit of help from you) and your kid was diagnosed six years ago??

    You need to remember that having a kid with autism doesn't give you a lifetime get out of jail pass for holding up your end of social/family relashionshipd indefinitely.

    1. KateK,
      Have you bothered to ask why she had to cancel plans at the last minute? Could it be that maybe her child was having a bad day and the thought of an outing was daunting for her and she just could not think of trying to pull it together in order to maintain the plans that were in place? Maybe she has not reciprocate play dates at her house because she is embarrassed of how her house looks like, because no matter how hard we try, our houses tend to look like a tornado has just landed and we are too tired/exhausted to clean up again? Do you realize that some of us can not return phone calls because we are dealing with the latest crisis that we have encountered and by the time we could return the calls, we are so emotionally and physically drained that we just want a moment of silence before the next crises emerges? Maybe at this time in her life, she can not bare to compliment that neuro-typical child because she is still mourning what she will never see in her own child? Do you think it is lack of parenting or discipline on her part that her kid harms others or destroys possessions that are not his? Come over to my house, see the thousands of dollars of furniture, window coverings, doors and walls that my child has destroyed.
      Yes, having a child with Autism is tough and it is our reality. But guess what, our world does revolved around our kids, 24/7, 365 days a year. This disability does not disappear overnight and there is no magic "cure" for it. Before you pass judgement on her about her BFF or helping out with her elderly parents, did you ask her if you could watch her child so she could go see her BFF or help with her elderly parents? Some of us with children on the spectrum have no back and/or respite from what we deal with on a day to day basis. I could have written that post because I have felt her pain and anguish. My own father recently lost his battle to Parkinson's. For the last 9 months of his life, he was in hospice. Yet, I had no one that could watch my children so that I could fly out to see him, let alone attend his funeral.
      So before you pass judgement, I say to you KateK, what have you done to try to help this person/relative in your life? Have you offered any respite for her, even for an hour so that she can take a shower in peace not worrying about her child? Have you offered to bring over a home cooked meal? Did you offer to watch her kiddo, so that she could visit her BFF or help with her elderly parents? It does not matter when her child was diagnosed, my child was diagnosed twelve years ago and we still struggle every day.
      April is Autism Awareness Month, and from your post, it is obvious that you are not "aware" of what some parents go through on a daily basis.
      And this autism mother can tell you KateK, I have chosen which social/family relationships I prefer to maintain. And the ones that are in my life, know of my daily struggles and help when they can.

    2. Kate, I don't know what your issue is but you left almost the same exact comment on my page. I read nothing about a elderly parent of BFF with cancer in this post so I'm not sure what that is about. Maybe something happened to you who knows but you really should get some help.

  9. This Mother is hurting. God bless her and her son. My little boy is on the spectrum and is high functioning, and we still have our challenges. Hang in there. We are.