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It’s Okay to Feel, Despite What the Internet Tells You

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Being a parent often means that you will have unsolicited advice bestowed upon you when you least expect it. But being a special needs parent means you will not only get unwanted advice, but you are also likely to be counseled about how you should, or should not, feel about your child’s challenges.

This might happen in real life, among your family and friends, but it’s even more likely to happen out there on the interwebz.

But I want to tell you a secret about that. Ready? Come closer…

It’s okay to feel whatever you are feeling. You don’t need anyone’s permission for your feelings.

You see, this is a journey. Not just life, although life is definitely a journey. But I’m really talking about parenting a special needs child. There is a process involved that begins when you start to have concerns about your child’s development and it goes all the way through diagnosis, denial, anger, acceptance, and advocacy. In between all of those, you have to remember to include a long period of educating yourself and your family about the diagnosis. When I say this is a process, I really mean it’s a long, complicated journey that’s full of setbacks and triumphs.

Each person’s process is unique to that individual, and depends on their own fears, beliefs, history, and emotional state. There is no set amount of time for each stage of the process, it’s completely dependent on each person’s own experience. So for anyone to have the sheer audacity to tell someone else how they should or shouldn’t feel is beyond poor etiquette; it’s someone that is in a different place in their own process, not allowing another person to have the space and time to completely process their own feelings.

Yes, I’m talking about the recurring tendency for people to silence others for expressing that they “hate autism” or that they wish their child wasn’t “trapped by their autism.” As long as you are exercising good parenting judgment and not saying those things to, or in front of, your child, then by all means you are entitled to feel those things. They’re feelings and, as such, are a natural part of being. Feelings can’t be right or wrong, only actions can be defined that way. So if you have a personal blog where you write about your journey, then you have every right to express the very real feelings that you experience on that journey. If you need to hate autism today, then go ahead and hate it. Just know that you won’t feel that way forever.

No matter what anyone else says.

The only thing that IS wrong is when someone tries to silence someone else, to alter that person’s process to suit their own selfish agenda. Don’t let anyone do that to you. You WILL find your way, all the way to the experience of acceptance. I promise. But everyone has to get to that place in their own time, on their own terms, not on someone else’s.

Just try not to go on this journey alone, okay? Find other parents, those that understand and accept you where you are. Those that judge your feelings and nitpick your words? Avoid them. They’re so busy being self-righteous that they don’t have time to be understanding or nurturing. And they seem to have forgotten that they were once in that place themselves.

And above all, remember this: no one but YOU understands your child and your family dynamic. Every child’s needs are different, and some are more intense than others. Own your feelings. Feel them. And don’t let anyone else take that away from you. And never be afraid to take the next step in your journey.

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

20 responses »

  1. decipheringmorgan

    While I find it uncomfortable when someone says, “I hate autism!” I don’t like the admonishment that some convey towards a parent when they say it. They aren’t saying they hate their child, they are saying that they hate how autism impacts their child. Frankly, I’m not always thrilled with how autism impacts me or my child.

    That being said, everything you say is true and well said. Thank you, Flannery.

    There is no right way to feel. No one can tell you HOW to feel because those feelings are yours alone. There is no thought police, even in the world of autism.

    Reply
  2. “Yes, I’m talking about the recurring tendency for people to silence others for expressing that they “hate autism” or that they wish their child wasn’t “trapped by their autism.” As long as you are exercising good parenting judgment and not saying those things to, or in front of, your child, then by all means you are entitled to feel those things. They’re feelings and, as such, are a natural part of being. Feelings can’t be right or wrong, only actions can be defined that way. So if you have a personal blog where you write about your journey, then you have every right to express the very real feelings that you experience on that journey. If you need to hate autism today, then go ahead and hate it. Just know that you won’t feel that way forever.”

    My problem with that is blogs ARE a public space, where autistic people (including your own kid) could find it someday. What kind of message are you sending when you demonize autism, when you hate autism? Because blogs, whether you mean them to or not, send a message to the wider world. If you are struggling with your feelings and acceptance of your child’s disability (using the wider “you” here, not you specifically), put them in a private journal or a password protected file on your computer, if you have to get them out. Vent to a trusted friend. But don’t put them out in public like that. Because like it or not, when you hate autism, you hate your child, because there is no separating autism from your child. Even if you think your child was “normal” once and regressed, they are not “normal” anymore. They are autistic. That is who they are. And how would you feel, if someone used a fundamental attribute of yours, a fundamental part of your individuality, and said they hated it? Wouldn’t that make you feel like they hated you, too? Even if that’s not what they thought, not what they wanted to say, not what they meant?

    I’m also curious if your feelings on this apply to the “Autism Every Day” video put out by Autism Speaks, in which a mother says in front of her autistic daughter that she contemplated driving off a bridge with her daughter in the car.

    Reply
    • I don’t think anyone gets to dictate how blogs are used, nor do I think that censoring the real and valid feelings of someone is helpful to others. I actually so have a physical attribute that is written and spoken about in a derogatory manner. But I still don’t agree with censorship. Blogs are a way for parents to find each others with similar circumstances and challenges. We will just have to disagree. Also, I haven’t seem the AS video, so I cannot comment one way or another.

      Reply
    • Here’s my response to the Autism Every Day video, specifically focussing on the “drive off the bridge ” comment. It also addresses your comment here.

      http://sharon-theawfultruth.blogspot.com.au/2011/12/leave-alison-alone.html

      Reply
    • Why does hating an aspect of your child for a moment mean hating your child? That makes no sense. I hate that my 5 year old has the most high pitched shrill scream, does that mean I hate her? Not at all. When I hate on autism in regards to my 7 year old daughter, it’s a hate on just that….autism. Our children are constantly growing and changing, something that I hated that my daughter did when she was 3 (let’s just say…playing in poop…oh how I hated her need for sensory input in her own feces!), isn’t something I even worry about now. If she was to read about my hatred in all that, I don’t think for a minute she would think I hated her.

      Blogging is a great way for people to find commrodity (sp?) with other parents in similar situations. I hate that there is this movement out there to just show the awesome happy side of autism. How about the meltdown at the grocery store? How about the meltdown over having to wear a coat outside? Etc etc etc. If we don’t talk about these things, then how are people going to know about it? Those are the moments I hate autism! I see no reason why we have to hide behind password protected documents on our computers that we pray our children will never see after we die. My children will always know that I’m human, and I have feelings. Somedays…I effin hate autism. Everyday…every moment…I love my daughter. You CAN separate the two.

      Reply
    • decipheringmorgan

      Cara, I can understand some of what you’re saying. Some parents DO write about autism in a way that is disrespectful toward their children,, in my opinion, any way you can view it. I don’t like ascribing to the victimommy route in writing, but, like Flannery, I do try to be realistic to a degree in how my life is led and how I view it. Sometimes, it’s very funny. Sometimes, it’s sad and heart wrenching… Sometimes it’s hard, very hard. I don’t see the issue in saying that when people are coming to our blogs and asking for advice, do you? If we’re writing nothing but sunshine and rainbows, wouldn’t that be lying when there are real challenges?

      Also I know you were referring specifically to Flannery, but speaking about your child as if they aren’t there, such as the mother in the AS video, is horrid, especially in the manner that she did.

      Reply
    • I avoid saying ‘hate’ with ‘autism’ but I have a visceral response to this quote. “when you hate autism, you hate your child,” WRONG!!! DON’T TELL ME THAT I HATE MY CHILD. YOU KNOW NOTHING ABOUT ME OR MY CHILD!!! I don’t like what autism is doing to her. I hate that she desperately wants a friend and in spite of doing everything I can to help her , she hasn’t been able to make it happen. I hate that she is lonely. I hate to see her suffer. To say that I ‘love’ the autism that affects her this way would be a disservice to her. To answer your question, I don’t see autism as an ‘attribute’, it is a disorder. So if I had a disorder, I wouldn’t expect my loved ones to think of it as a blessing. I would still believe they could love me and not my disorder.

      Reply
  3. I don’t think it is at all fair to say we “hate our child” by hating autism. My mother was bipolar, I hated what her bipolar disorder did to her, I hated the way it impacted her life. I hated the bipolar disorder. I most definitely did not hate HER. My son’s autism is the same way. I love him. I love him with his autism and I would love him without it. But I do NOT love his autism and the struggles it causes for him.

    Reply
  4. There is this blogger that I like to read, it’s about politics…but I truly don’t agree with everything he writes, when I see where he is going…I quit! No one needs to read something that they think it’s offensive or don’t agree! I barely write comments, but i needed to thank you for this! This nonsense of having to hear how I should feel about my son, gets me really mad. He is an awesome 5 year old, happy, loving, full of energy, a little boy that happens to have autism. I have days that I want to run away, it is not pretty! But it is what it is!

    I loved what you wrote, I see a lot of the “Thankful Parents” and I wonder what is wrong with me? Why I don’t feel this way? Why am I jealous every time I hear a kid making a simple comment? Why do I feel bad if I forgot to lock the door with all its locks?

    Thank you for writing this!

    Reply
  5. I agree with Nancy. when you see a child having a meltdown, when they are so sad and angry it is horrible to see, to see that child in pain and suffering. However, I know from my experience working with children with autism (I blog about it, if you are interested the link is http://mysonnydays.wordpress.com) it is not the whole child. I think it is like an attribute, as Nancy said.

    I for example dislike saying, ‘an autistic child’ as it infers that the whole child is autistic and that is it. I prefer to say, ‘this child has autism’ as this leaves room to say, ‘this child has a warm heart, a good sense of humour etc’ instead of labelling a child with negative connotations.

    I have enjoyed this blog…interesting read!

    Reply
  6. It’s unfortunate especially for those if us who now have adult children.
    Dear Abby – Feeling Chastised in CT | Take Another Step – Taking it a Step at a Time – Autism

    http://vcdale.wordpress.com/2013/11/14/dear-abby-feeling-chastised-in-ct/

    Reply
  7. i adored you before you this post. Now I straight up love you. Thank you so much. Sharing FAR and WIDE. This deserves to be read by EVERYONE on our journey. So well said. So vital for parents raising special needs kids to hear.

    Reply
  8. You got it. Love you. So glad you’re a part of my journey.

    Reply
  9. I cannot tell you how I needed this today. To-freaking-day. I do worry about the girls someday reading my thoughts on their lives. But in the end I believe they will understand how strong my love is for them. Without leaning on others, either in real life or this virtual one I know I would be lost, isolated and alone. Thank you for being a part of making me feel secure! Sharing this everywhere by the way :)

    Reply
  10. Maybe this will sound familiar to others among your readers — I USED TO care about what other people thought. After a few years with an autistic child, I’ve become numb. Numb to the nasty looks of strangers, the horridness of IEP meetings, the cold shoulders from the other Moms at the playground. Really I have. I have bigger issues to worry about, and they’re not mean, they’re just uninformed. In the same way, I am numb to the malice of strangers online, and I truly hope other mothers are also. Like so many others, they just don’t understand, and they never will. That said, thanks Flannery!!!!!

    Reply
  11. I love this. Thank you.

    Reply

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