Saturday, November 23, 2013

How Can We Best Support Autism Parents Who are Struggling?

Last week I wrote a blog entry about a poor parenting moment I had.  I laid it all out. It wasn't anything way out there. It was about a moment of struggle that I had when my Beans was having a what I call 'not having it day' that was in more of the week than a day. He was not having clothes, and not wanting to move when asked. I was late for everything that week, and some things were really important. Days on end like that had me at the end of my rope. I yelled at him, and tried to pick him up, which did not go well, since he's about the size of me. One day a few days ago he decided he was going to just park it on the middle of the parking lot. Just booomp., and there he is. Solid as a rock. Nothing I can do to change it. He's just there until he decides not to be.  There's not a doubt in my mind if he was smaller any parent would just pick him up, and move him. The thing is as his body grows, cognitively he isn't.

In any event, I posted that post knowing that in the autism community there had to be others struggling with the same thing.  Maybe their children wasn't as old as mine, but they had to experience this behavior, and at times of constant struggles I am sure that most parents have yelled. Yet, when I posted that entry I got very little feedback. When I did, it was mostly hinting at pity for me, or maybe disdain? I am not sure, but I do know I got little support. It was awkward, and the way I felt judged was not helping, so I took it down.

This got me to thinking, and wondering.

When did it become a taboo to say you're struggling with your special needs child?


If I were to post about some awesome new thing one of my boys did I would get all sorts of feedback. That is a good thing. Letting others know that we are happy for them is always a good thing.  It's also not everywhere that we can talk about our children's little milestones, and know that other people are really appreciating what we're talking about. Other autism parents know how great some of those little things are.

However, we need to be able to remove the taboo of an autism parent being able to say that they're
Having a bad day.

Encountering something we don't know how to/can't handle.
Needing support.
Needing reassurance.
Wanting some advice.
Needing to know they're not alone.
Upset, and overwhelmed.

I know that we as a community have worked really hard to advocate positively for autism awareness, but that cannot overshadow the fact that sometimes living with autism, whether it be first or secondhand, is hard. I have even heard from autistics themselves that say they're ignored when they ask for help, because it tends to shatter the autism parents idea of them. They want to see the autistic person as an inspiration. I know as we move away from the deficit model of autism we need to really not go too far into the other direction, and ignore the real needs of parents, and autistic people who still need support, especially in a society that has not yet achieved the plateau of acceptance, and inclusion of disabilities.

I fear we leave parents struggling in shame when they don't feel like they have a handle of being an autism mom like everyone seems to when we never talk about our less than stellar parenting moments. When we tend to look the other way when autism parents are needing help, or support we can't foster the positive changes we aspire to.  In order to get a real, meaningful change in how we view autism we must learn to address it as a whole, and not only the times that make us feel warm, and fuzzy.  Otherwise, it is just superficial change that skips any problem solving.

So, I am the first one to admit, as much as I know about autism, As much as I know about advocacy. As much as I tend to be the last one to lose my cool. I don't always have it all together.

Sometimes, I yell.
Sometimes, I do things that I know better than to do, but in the heat of the moment I lost my common sense, and made the whole situation worse.
Sometimes, I don't know what to do.
Sometimes, I get so overwhelmed that I take the easy way out.

Sometimes, I need advice, help, and a new way to look at things, and that is okay.



23 comments:

  1. Excellent, excellent, excellent! Some days can be very difficult and life is not all sunshine and roses and everyone (be they parent or adult autistic or both) should be allowed to "tell it like it is".

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  2. I hear you.
    I find it so difficult.
    I don't want to upset anyone and I feel that almost anything I say could.
    Like walking a tight rope, x

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    1. I worry about it, too, but then I just say whatever anyway. lol

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  3. I've only this year had a diagnosis on my three kids, aged 4, 7 and 14, and sometimes, especially when they're doing simultaneous meltdowns on differing subjects, I just lose it completely. I'm learning strategies and coping mechanisms for the children, but I could desperately do with some for me!

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    1. It's a big learning process, and the best advice I have (from a mom who has been doing this autism thing for 12 yrs) is let go of how you think others are seeing you. Do what you need to, even if it's way against the grain, and of course find that time for you.Never stop fighting for that time you need to recharge!

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  4. Awesome read! Thanks for sharing... bitter sweet knowing us parents are not alone in our struggles... Best Wishes...

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  5. Awesome read! Thanks for sharing... bitter sweet knowing us parents are not alone in our struggles... Best Wishes...

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  7. Unfortunately this is the environment we find ourselves in. We are not allowed to express options that don't go along with the norm without being bashed or ignored. We are all not in the same situation autism-wise and I don't understand why some folks don't or won't understand that. The folks who tout "please ask for help" are the last to offer any. I'm sorry I did not see your original post. I wish I had.

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    1. I hope that we can change that around by being open, and supportive of each other. :)

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  8. We have at least 4 "not having it days" a week. If we didn't have these days, would our children really be special needs? I have at least 2 of them a week myself.

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    1. I have those days, too. I try to hibernate in my home as much as possible on those days!

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  9. Couldn't agree more! My wife and I have actually setup a parent support group in our local community just for this purpose, so that people can be honest and not be judged. Good on you for sharing and for those who don't understand well that's their issue not yours. They should just be thankful that they have not had to deal with that. I have and it's not easy.

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    1. Good for you for stepping up, and offering a platform for others to share, and support!

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  10. I don't want to be arrested because of the soft strait-jacket I sewed for my daughter (which I haven't used for years, people! I have passed the statute of limitations).

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  11. My friend (who has 2 kids with ASD) once said "autism is kicking my arse today" and that summed it up perfectly for me. When my son is 'on one' and there is nothing I can do, I think, Autism is kicking my arse today. Some days it's OK and I can be flexible when my son isn't but other days it makes me cry and want to just give up. Keep being honest about the hard stuff, it's so important. x

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    1. Thank you! Denying that negative days exist doesn't make them go away. It just makes us feel shameful for having them, and nothing good ever comes out of shame. I will keep writing what I'm thinking, and those that are like minded will keep following. Thanks for reading! :)

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  12. You know the best place in the world I ever went was to a parents meetings where we all figured out we had the same kid, in a way. Kids with autism do have differences, disabilities. And we as parents often fight the schools, make the tough decisions whether or not to medicate our kids, homeschool our kids, punish our kids, get OT, PT, Speech, behavioral, or psychological therapy and decide whether our kids are growing from it or whether we can even afford it....like any other parent, but in the same different way. We have to make decisions other parents never will. To split us apart takes away the only true understanding we may come across. Oh, yeah, and GUILT.

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    1. Absolutely! The guilt, and the weight of all the decisions we have to make is 10 times other parents. It's too much to just ignore. It's not all gloom, and doom, but it's not always hearts and flowers, either. By casting aside anyone needing help to address some this stressful situations we set up a system of neglect, and failure. We have to feel comfortable enough to talk about our reality. It's the only way we are going to gain acceptance on a broader scale.

      Thanks for your comment!

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