Autism · My world

Quiet voices

Daniel Ridgway Knight  The Conversation

When Kyle comes home we spend a few minutes together sharing our days with each other.   Yesterday he met a co-worker with a child who is on the autism spectrum.  Somehow this came up and they had the chance to talk.  Her son is getting older, just approaching puberty and is becoming violent at times with her.  He has always had melt-downs, the rare and occasional fit.  But as he gets larger and stronger it has become more and more an issue.  Her son had pushed her down the stairs breaking her arm.

I think I am ready to talk about this.  I think I am ready to say all this, here on this blog, here in semi-anonymity: My daughter is severely autistic and in residential care.  My daughter can be violent, she can hurt people, she has hurt me, her dad, her siblings and her care workers.   We did the best we could and we still do.  You can demonise me if you like, you can say I didn’t try hard enough or do the right things.  I know what we went through.  I know that we tried everything we could and in the end made the best choice possible.   And I know I am not alone, but for a long time I felt like it.

A friend of mine told me about having taken her autistic son to a Dr appointment.  While waiting her son began to display minor characteristic behaviors, humming and hooting, repetitive rocking movements.  An old woman in the waiting room asked “Oh, you have a disabled one here?”.  My friend was at first offended, “yes, yes  I do.” she said.  The woman leaned over and whispered, “It’s ok dear, I have one too.”  The old woman’s son was in his fifties, she would use cloth restraints to tie him to the bed when she left home because if she didn’t he would become stressed and destroy the house.   

It is almost like being part of some underground.  There are parents of normal kids.  They don’t have the foggiest idea what it can be like.  There are the parents of autistic kids who don’t exhibit violent behaviors that are in ways worse.  Some are sure if you were doing what they are doing then your child wouldn’t have those behaviors and they have no problem telling you that you need to do this or that.  Ironically I know that some of those same parents flip when the parent of a normal child makes suggestions about how they should change their parenting and their autistic child will be better.   They  mean well.  I know they do.  I know a good many of them would give support and help if they knew how.  But they don’t know what to say.  Our lives are so far beyond the norm, even for autism.  

Other parents of autistic kids can see it coming and they are terrified by it.  They know they can’t control their five-year-old’s meltdowns, they hope their child will outgrow them,  they have no idea what to do if that doesn’t happen.    We parents of autistic children with aggression issues usually don’t talk much.  When we find each other, we start sharing stories in hushed voices, at some point realising that the other understands.  It is such a relief.  Someone who won’t condemn you , someone who knows, who has the been there and understands the pain.

Three years ago I would have given ANYTHING to be able to get online and find one person who understood what we were going through.  Anything.  We were totally alone.    When I first wrote about Rachel on this blog I started seeing searches coming in about autism.  The most heartbreaking were the ones I had typed in myself a couple years before:  “Autism and aggression”, “Teen agression or violence + autism”, “Residential placement for autistic teens”, “Support autistic teens”, “I have failed my autistic child”.  It was like reading Post-Secert or something.  Pharses that spoke of someone out there trying to find something, some help, some hope.  And to end up here where there was one post about my austic daughter?  That seemed so desperate. 

I am going to write more on this tomorrow.  But for today I just want to let any parent with an autistic child with severe behavior issues stumbling in here to know,  you aren’t alone.  I have been there too, I still am in ways.  I know what it is like to read over an autism forum and close the window because you know that no one will understand.  There are things you can do but it isn’t easy.  Residential placement can be a very good thing not just for you and your family but also for your autistic child.  But it can be emotionally difficult to get to that point and even more difficult to get what you need from the system.  But there is hope.  It won’t be perfect, it won’t even be normal… but you aren’t alone.  There are others of us out here with quiet voices.


11 thoughts on “Quiet voices

  1. This is a really beautiful post. My son is only four and we just don’t know how things will turn out in coming years and as he is a teenager. I pray so often that we do not have to deal with what you have had to. Thanks for sharing, I am sure it is a great comfort to many parents!!

  2. It’s hard to imagine anyone condemning you for the choices you have had to make. Even further, it’s hard to imagine anyone within the special needs community attacking you for those choices! It’s just astounding to me anyone could be that cruel to a parent who so clearly has done every single thing possible for this child. I hope you have encouraged others to speak up and that they won’t feel alone. It’s hard enough being the parent of a child with special needs without being blasted for it. Goodness.

    Bless you for writing this. It’s lovely!

  3. Thanks, Tamie and asdmommy.

    It isn’t so much the out-right condemnation as being told: “I would never do that”. And of course those saying that might be right. They might be able to handle more or they may have less to handle. The other part is the endless recommendations: Have you tried a certain diet, supplement, behavior management strategy?

    And there is something that is very hard about admitting even to yourself how difficult your child’s behaviors are. When you have spent years explaining and diminishing your child’s behaviors to others they may well be surprised when you tell them about your placement decision.

    There is a ton of emotional fallout when you finally get to the point where you are seriously considering an out of home placement. I find myself forever surprised both at how kind some people can be and how callous others are both in and out of the special needs community.

  4. And to clarify, I meant that I “hoped by WRITING this you have encouraged other people to speak out…”

    I too get tired of the endless recommendations – and try very hard to not do that myself (although I catch myself sometimes). I have learned that some things work for some kids and some things don’t. We’ve had a few amazing things, and other things that don’t do squat. I think the treatments (and their success) are as varied as the likely causes.

    It’s still hard to believe someone saying even “I would never do that.” You just never know what you would do until you are faced with what you are faced with. And while I’m sure none of your options felt particularly good, you surely made the right choice for you and your family. I can’t imagine the emotional fallout from that, and admire your strength.

    Darcy (don’tcha love your name???)

  5. I think having a child with special needs is a great lesson in not judging other people, and learning about being in someone else’s shoes. I find myself much more empathetic than I ever used to be. I laugh at myself now because I used to be that annoyed person in the grocery store when a child was screaming. Now I know better.

    I’m still reeling at people being so judgmental of your choices. It’s sad that you have had to deal with that, on top of everything else. And I really am leaving now, but had to say to you BIG HUGS.

  6. Yes, Darcee is a great name Darcy and the right marriage could have made me a Darcee Darcy. (too much Jane Austin)

    I think I have to chalk people’s very rare comments to them trying in a weird way to be helpful or empathetic. Or they just don’t understand. Like the woman in the store who, when Rachel was having a meltdown at five said something to her teenage daughter like “When you were that age I wouldn’t have let you act that way.” just loud enough for me to hear.

  7. As one who doesn’t want children, I sure know all about condemnation, and I certainly wouldn’t ever condemn another parent. I’ve seen some really cruel behavior from some parents towards others, and I can’t imagine how it must be for a parent with a special needs child. I don’t have any advice, so I guess my prayers will have to do.

  8. Hi Darcee I’ve never sent a blog before this is my first time and I hope that you receive it. I did stumble across your story at a time in my life where it was a dear blessing for me. I have a daughter who seems to be similiar in behavior…she recently has been very violent toward me, she beat me up bad. To make a long story short she has developed some serious patterns of aggression largely because she had a long-term caregiver leave her(she/caregiver used to live with us about 2yrs). Now as her mom she cannot adjust to me being her sole caregiver as well as her mom. It hurts because socially and environmentally she made astounding progress while she was with her, now she has regressed to violence so much so that I have inquired intake applications to residential programs and plan to follow through because shes so out of control. I have experienced the exact same responses from other parents and special-needs parents. My family has distanced themselves from us and when I do hear from them it is a pity response. I know that they don’t know what to say but I feel that they could put some effort and research into empathizing with us. I COMMEND YOUR BRAVE SPIRIT for discussing this because it helped me CRY and release some of my pain for the first in months. It does seem as if I live in a secret underworld, having to not be totally truthful about my scars and bite marks to co-workers and friends. Feeling as though in public that no one else has an autistic child but me as she melts down at 10 years of age. I hope that you keep writing. I plan to do what I can to bring some national attention to our pain so more people can be educated and help us in the near future. God BlessYOU!

  9. Oh… The power of angels. You have indeed reached someone who truly needed to hear your story. I google searched “Coping with residential placement for autistic teen” and found this blog post. I am, right now trying to make a decision on placement for my 14 year old severly autistic daughter who has, at times, had the behavior you describe. I am truly struggling and praying to make the right decision. I read the post, cried, and then noticed the blog was posted on her birthday. I have to believe this is a sign.
    I know the post was made two years ago, and I don’t know if this response will reach you – but thank you.
    We are not alone – and this is of some comfort.
    God Bless You.

  10. I suspect the hormonal changes of puberty make ALL teens more agitated and aggressive. Your situation is made far worse by your daughter’s uniqueness in many areas including her autism. She has a personality like anyone else and, like anyone else, she has the weaknesses of personality too. If she were able to speak, I am willing to bet you would be blogging about how she says mean stuff, or calls you vicious names. Just because they have autism does not mean they lose all personality. She is obviously a person with intensity of emotion.

    My guess is, once she learns a way of communicating (some have learned it as adults) by way of an iPad, she will voice her feelings a little better. I imagine if I were unable to speak, I would go ballistic if people could not understand me or if I could not communicate to them. I suppose I would bite, kick and scream. Does that mean I am no longer a human being? Of course not, but if it puts my family in danger, I would certainly hope my family would put me in a place where I would be safe, as would my family. These kids have expressed their frustration with themselves, and many communicate their understanding for their parents’ actions. They understand. It is amazing.

    Do not lose hope. Any teen begins to individuate and separate from their parents. It is a sign of good, mental health. It might be her only way of expressing this and she may grow from it. It is a hard road to travel, and not everyone travels together. Love is what does keep us together….think of me babe whenever…oh…sorry. The thought train just took over!

    Smile. You are doing your best. God knows this.

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