RAW, UNCENSORED, HEARTFELT STORIES FROM THE TRENCHES. WE ARE AUTISM PARENTS. WE LOVE OUR CHILDREN. WE'RE KEEPING IT REAL.
Showing posts with label understanding. Show all posts
Showing posts with label understanding. Show all posts

Friday, January 11, 2013

Going Deep, Deep Underground

We feel like we owe you an explanation.

First, let’s be honest. Autism Underground was a somewhat selfish undertaking. It allowed us to vent and discuss issues that we may not have been super-comfortable addressing (for varying reasons) on our own blogs. That is true. But the catalyst was an anonymous comment submitted on one of our blogs, and the resulting discussion.

See, the blogging/facebooking/twittering autism community, sadly, can be quite divisive. When we work together, cool things happen like Autism Positivity and Autism Shines. However, we also can find ourselves at odds with ourselves, as we try to reconcile our different worldviews on autism.

Autism Underground is meant as a safe place to share snapshots of the emotional parenting journey unique to the autism (and special needs) community.

In the beginning, we had a lot to say – sometimes even twice in one day. Some of these stories must have been bubbling up inside of us for years!

While we still have stories to share, we struggle to find the time, emotional courage, or even simply the motivation to keep posting.  Oh, we still might put something out there every once in a while, but we won’t be updating this site very frequently (obviously!).

However, we still believe in the concept. Autism Underground has connected us with inspiring, sometimes struggling parents who feel at home here. Some have even posted, and perhaps have no other place to participate in these types of discussions.

So the Underground will stay put, as long as we all agree that sometimes we might go deep, deep underground. We'll remain here for you to explore our thought-provoking posts of yore, or to submit to us your own burning stories. We hope you’ll continue to check back in occasionally, but do forgive us if we’ve been a little slack.

Meanwhile, while some of our writers have chosen to remain anonymous, a few of us have shared links to our own blogs (ahem!), and with a few clicks, you can find our blog rolls featuring a plethora of excellent blogs, resources and actual humans to support you along this journey.

In fact, all we really want to say can be summed up in these four words: YOU ARE NOT ALONE.

P.S. SEND US YOUR POSTS: AutismUnderground@gmail.com

Friday, December 7, 2012

What Does Little Suzie Want For Christmas?

Let's see. A bushel of pine straw? Dental floss? 200 blue matchbox cars all in a row? Honestly, I have no clue.

She's non-verbal, and her interests are...eccentric (at best). I used to get really sad when someone asked me this question. Now, with a few more years of autism parenting under my belt, I generously proffer these guidelines.

Here's what Little Suzie wants for Christmas:

  • Nothing that you will find appropriate, typical or sensible. 
  • Probably something different than what she wanted yesterday.
  • If another kid her age wants it...try again. She doesn't.
  • Something that is not sold in ToysRUs.
  • If she unwraps it just enough to play with the curling ribbon and sleeps with it, consider it a success.
Please also adhere to the house rules:
  • Give nothing with more than 3 parts because:
    • She will lose interest if it requires time to build.
    • She will lose or break a part and scream for a couple of weeks.
    • She will be annoyed that it has an even number of parts. Or an odd number of parts. (We'll just have to wait and see.)
  • Check the age recommendation carefully:
    • Yes she's way past 3, but if it specifies that it is not meant for children under 3, we don't want it. She probably will eat it for lunch.
    • If it's intended for children her age, it's likely going to frustrate her.
    • So something appropriate for kids between ages 3 and 7 (but over 70 pounds) should be about right. 
Hope that helps. 

Of course we want to make her happy. Don't we all remember the joy of unwrapping the Barbie Dreamhouse or Matchbox Car Track we'd been eyeballing for months? (The kids in the commercials were having soooo much fun!). We want to see the same excitement and twinkle in her eye as she anticipates and opens the gift of her dreams.

Unfortunately, while other children might present you with lists so long you'll regret asking the question, some children with special needs (and their parents) cannot give you an easy answer. And, if a request does come, it may not match your own, preconceived holiday vision.

Can we make a pact to NOT be ashamed to gift that box of dental floss if that's really, truly what makes her happiest? I mean, if it makes her feel just as loved, appreciated and special as the day you received your very own Barbie Dreamhouse, what's the harm? Isn't that the point?

Even better, we won't have to stand in line or battle any Black Friday shopping savages to attain it!
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If dental floss isn't your game, here are some related posts and shopping ideas that might also help your gift quest.  Happy holidays!
That's enough. You can Google too. 

If you have the perfect gift idea, do let us know! Also, what's the oddest gift you've given that brought the biggest smiles? Please share. It will make those of us pricing out bales of hay feel MUCH better.

By the way, I also blog semi-regularly over at My Whac-A-Mole Life. We're open 24/7. Stop by anytime.

Thursday, October 4, 2012

Forgiveness: An Open Letter to My Mother

Mom -

How I wish you would listen. How I wish you would try. How I wish you would care more than you show.

I know that a lot of things in your life were not easy and that’s because of me. I was born when you were just a child. Sure you were just out of high school, but a child nonetheless. You decided to marry far too young to escape something – something that seemed to stifle you but that I’ll never understand. You were a model mother for years to the outside world, even though we walked on eggshells around you for fear of your wrath.

I forgive you for that.

Then came the day that you rediscovered him – a long lost love - and you wanted nothing to do with the life you had before. You wanted to be with him and not with the person with whom you made both a child and a commitment. You kept me away from my father – the person I was closest to – because of your own desires.

I forgive you for that.

Your life became more and more about you. I grew up with the assistance of other family members who took me under my wing. You were emotionally abusive to me, threatening to take away love and affection if I did not do as you said or take your side. You told me that I should be grateful that you did not turn me out – that you provided me a roof and food – despite the fact that it was what parents do. All I wanted was your love. Instead, I felt fear.

I forgive you for that.

When my son was diagnosed with autism, I needed the support of family. Instead, you berated me – made me feel like I had betrayed you – because I needed everyone, including my father. I needed you to understand what my world had become and what I needed to feel whole. You couldn’t get past your own feelings to see what I – your daughter – needed. You still can’t.

For what you do to me, I forgive you for that.

However, you then seemed to write my boy off. I didn’t suffer from having the family that didn’t believe he was autistic – everyone saw it – but I suffered a pain far greater than a lack of validation. Instead of putting forth the effort, instead of trying, instead of treating him like a person, you simply seemed to think that you wouldn’t have any relationship with him. He has been ignored and cast to the side.

I’ve begged you to try. I’ve begged you to see the absolutely wonderful person that he is. I’ve tried to educate you so that you would be willing to make simple accommodations for him. I’ve tried to teach you about autism so that you wouldn’t take it so personally when we can’t take him out to dinner or when he has a meltdown.

Instead, what I’ve been met with is accusations that I haven’t done a good enough job teaching you what to do. I’ve been accused of using my son’s disabilities as excuses. Instead of listening, watching, and following the model that I set for you, you look to blame someone else. You allow my siblings to do the same. You’ve made me feel like we are somewhat less because of the world – the autism community – that we find ourselves residing within.

I’m not sure I am strong enough to forgive you this time.

You see, this is no longer about me. It’s about him. He deserves a circle of support and of people who will genuinely try to include him in their lives. For lack of a better word, I am pissed as hell at the way you treat him with a general sense of neglect. I am pissed as hell that you allow and defend the way that my siblings do so.

The truth is, I want so badly to forgive you – for everything. You are my mother and I want nothing more than your approval and affection for both my beautiful little boy and me. I can’t understand why that is so hard for you to give.

So, I’ll ask again – please see the beautiful, delightful child before you. Instead of seeing a relationship that will never be what you imagined, see the possibilities. See that he is worth the extra effort – because he is – and take the time and energy to get down on his level. Sit with him. Be with him when he seems self-absorbed and closed off. You see me do it. Make yourself a part of his world.

I’m not going to ask you to do it for me, because you’ve never been willing to do that. Instead, do it for him. Ultimately, if you don’t, you are the one who is missing out on the absolutely wonderful and inspirational person he is.

You’ll also miss out on who I have become. You’ll miss out on the growth that I’ve made, the voice I’ve gained, and the strength I’ve found all in the name of my boy.

I hope that, someday, you’ll see it. I hope that you’ll see what you’ve missed in the absolute pursuit of your own desires and misguided ideas. I hope that you’ll try to be a part of his world sooner rather than later. I hope you’ll try. I also hope that you’ll end up being the mom that I’ve wanted you to be.

With all the love in the world regardless of what you give back,

Your Daughter