April 2, 2015

It is Not Autism That I Celebrate Today

For me, Autism Awareness Day is a time of celebration.  But I'm not celebrating that fact that my son was diagnosed with autism.  That day was not one full of joy and happiness.  Today I am not celebrating autism.  Today I celebrate my son, Brandon, and all his accomplishments.  He works so hard every day to be self-sufficient, independent, and to communicate.  

Imagine the frustration this little boy has to not be able to tell me when he wants something, that he needs something, that he is not feeling well, or that he is simply excited about something.  For example, Brandon wants me to push him on the swing, he has to walk all the way across the backyard to come grab my hand, walk me back over, and put my hand on the swing.  Imagine every time you needed something, you had to walk all the way over to someone, take their hand, lead them to what you want to tell them, and hope they get what you're asking for.

If Brandon wants something to eat, the only way he can tell me what he is craving is if he can see it in the pantry, and put my hand on it.  He has melted down so many times because I can't for the life of me figure out what he is looking for in that pantry.  He can't say "gummies."  So, if he really wants a packet of gummies and they are hiding somewhere in the pantry, he just won't get them.

March was an awful month for Brandon.  He was despicable.  Unbeknownst to me, he had an ear infection and ruptured ear drum that I had no idea of.  He was in pain and uncomfortable for weeks, and I hadn't the faintest clue that there was anything wrong with him.  No wonder he would break out into full meltdown mode without warning.  When I found out about his ear, I thanked God for my patience and that I don't spank him as a form of discipline.

I celebrate this boy today, and all others who are affected by autism who have to work so much harder to do things that we take for granted.  You are determined.  You are courageous.  You are strong.





8 comments:

  1. I think this is my favorite of all your posts so far. You couldn't have said it better. P.S. Not sure if I have told you this before, but we don't spank, either. I'm never really sure if it's making things worse or better, but ultimately, I'm just not confident about spanking Milo for something I'm not one hundred percent sure he understands. Tyson has deeper philosophical objections to corporal punishment that have nothing to do with autism, haha. But that's a longer discussion. ;)

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    1. That means so much to me, Heather! It popped into my head this morning after reading some comments of people not wanting to celebrate autism in Autism Awareness Month. I see where there coming from, and it made me reflect on what Autism Awareness Month really means to me personally. I would love to have a conversation with him about that. I've done minimal research on the effects as well as long term effectiveness on spanking and would love to learn more!

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    2. I agree! I also wrote a blog this morning after reading the posts of others who are choosing not to celebrate increased awareness and acceptance. Nice job!

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    3. I have another one that I wrote that I didn't publish after reading the same kinds of posts where people "hate" autism awareness day/month. I need to read back through it now that I let it settle because it probably wasn't very nice and I try not to hurt anyone's feelings :).
      I just read your post. Love it! It actually says everything my unpublished piece said, although yours is writhed much more eloquently. I am going to share yours on my Facebook page! Thank you so much for commenting. Looking forward to reading more from you!

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  2. I love this blog, sums up a lot of things I feel to about my son, who is non-verbal autistic. I am collecting positive stories about autism to try and combat a lot of negativity in the world about autism. Also to give others hope who may be affected by autism. My name is Melanie Cosgrave and my email is autism.positive@btinternet.com and would love if you would be willing to share a short positive story about autism. Please feel free to contact me and I will answer any questions. Thank you.

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    1. Melanie, I would be happy to learn more if you would send me some more information. You can contact me here:
      https://docs.google.com/forms/d/14cx_KVkxyrT_3tt1bOo9ci7Y0pFLXsGd8TnBWHHXNyU/viewform?usp=send_form

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  3. um, why are you calling autism something that is so "broken" that it can never be celebrated as a part of someone? autism IS a part of someone, after all.

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    1. Hi Nate - That's not at all my intention. I very much regret that it was received that way. I love my son very much and I am so proud of him. It does hurt to see him struggle sometimes, but he is not broken. I would never use that would to describe my son. I couldn't imagine him any differently, and I wrote about that here. I hope you get a chance to read it and know that I love and accept my son for every part of him.

      http://www.ramblingsofaspecialmom.com/2015/01/its-hard-to-imagine-my-son-without.html?m=1

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