Sunday, January 29, 2012

Where I live....


I wrote this blurp a while back on my personal FB page and it got me thinking:  


"I think a very unique thing happens to a parent when they finally accept that they have a child with a disability....everything falls away and the only thing that matters is THAT child. As human beings most people, without realizing it really focus on shallow things (the "right" clothes, the "right" house, the "right" friends, the "right" way to act) There is a point where we as parents understand " This is NOT about me! This is about giving my child the BEST possible quality of life that they can have." It is a very humbling moment. Most people never go through something like that so I guess it is hard for them to understand how that thoroughly strips everything away. Lets face it, the public in general is uncomfortable with special needs. That "Holland" moment though makes you understand all the other families that love a special needs person, NO MATTER the disability. So I say be an Advocate but also be an Ambassador. Introduce people to our community, "our world" but understand that they will never live here until someone they love does."

This was what first got me thinking about "the planet Autism". When you have a child that is different then the norm it makes you feel VERY isolated. I feel like I live in a fish bowl but I usually don't realize it until we step out into the "real world". At home most things that can be broken already are, all of the important items are hidden or out of reach, there is easy access to the washer and steam cleaner for items that have not been deemed "no-no"s yet and the doors have deadbolt locks that need keys to open them. When we are out, I find myself missing the safe fish bowl, but if I let that feeling take over, how many things will my child miss out on? Or my typical child for that matter?



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I really want to embrace the inner bitch and not care what people think but I just haven't mastered it yet. It doesn't help that Autism is for the most part an invisible disability. People look at my beautiful child having a HUGE melt down and immediately assume that it is my poor parenting skills. How could any self respecting mother let her 4 year old act that way? The irony is I remember being that judging person...Looking at someone putting a "kid leash" on their child or putting them in a stroller that they were CLEARLY too big for, and shaking my head at their lazy parenting. Now that I have personally DONE those things out of necessity, I will NEVER again judge. Now I do what works, and I know it doesn't look that good on paper, but I'm more interested in having a functioning child than being kosher. I would also like to point out that I have gone the other direction too, and spent many hours trying to be autistic with him. Lining up every soda can in the house on the kitchen table, watching the credits to a movie over and over again just to see how happy it made him. Pointing out every license plate in a parking lot, counting every fire hydrant on the way home from the store, spending hours typing different numbers on an excel spread sheet. Hell, even tasting the deodorant just to see what the vast appeal was(yeah, yuck btw).
Honestly I find myself stimming a little when I get excited about something.
I am so thankful for my life and my children. I find it funny that this small tight knit community that I am happy to be a part of (yes, HAPPY) has it's own "politics". I am not interested in 'curing' my son, but helping him to emerge from himself. I have NO idea why he is autistic and to be honest I don't really think about it all that often. I think about ways to help him communicate and interact with people. I think about how to help him improve his special 'super" skills, and I think about what he sees. He understands more than I would have ever guessed. I know I am not a perfect parent (no such thing really) but I do know that I would do anything just to help my son be a part of the world. Seeing as the world is not likely to change just for him, it's my job to teach him adaptability, which is no small feat for some one on the spectrum. So, handmade signs for the grocery basket reading " The child in this basket is autistic, screaming may happen" and extra pants in hand, I try to leave my small, safe, fish bowl as often as my bravery allows.

7 comments:

  1. Wonderful!!! I have written similar posts and actually, I refer in my bio as being thrown onto another planet! LOL... Love it and I too embrace my son and am not looking for a cure just ways to help him cope. I don't think you ever fully get used to the ignorance though. But... we can remember when we were in their shoes and I try to embrace that to have the love, patience and compassion to handle these situations in the proper way and shed some light on why my son acts the way he does. :)

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    1. Thank you! It feels so nice to know I have a group of parents that is so totally on the same wavelength as me <3

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  2. I'm still trying to find my inner bitchyness but I have a hard time also. I completely understand when you say you will never judge again. It is a whole new world and we all have each other. We only want to help our kids.

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    1. Mine escapes me at times and I just stand there like a lump but then sometimes it gets me into trouble lol Finding the balance, I guess, is a life long lesson. Iam so thankful for this community that is so giving and understanding. I feel lucky to be apart of it...even on the "poop smear" days! lol

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  3. I feel like I have just looked into a mirror! I parent the same way! Yes, on paper it does seem a bit "tragic" to those that don't live it. Reality is sometimes that is also how we get our hugs and kisses. That really special moment when you know you did something right is when you suddenly hear, "Thank you momma." Whether it's clearly understood or not, they say it.

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  4. We are almost opposite in our parenting style lol. I let my child do the Autism thing all day and night, it drives me completely bonkers but I don't have the energy to stop him. I've tried but I can't seem to stay consistent. Right now we're just working on him talking, and I think once he's able to talk things will get better for our family at least. But until then I am in my fish bowl trying to escape but failing miserably. I hope you write another blog soon, I really enjoyed this one!

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  5. I just found this through your Facebook page because "Somewhere Over the Rainbow" shared one of your pics. This is really amazing (your writing as well as your unconventional approach to parenting). I have a kid with ADHD. Different disability, same judgement from others who aren't in the know. I also use parenting techniques that the experts would frown on. I don't let him quit when he starts to get distracted. I don't let him give up when he gets really frustrated - even if he cries. I keep pushing him until he gets it. And then he smiles and is so proud of himself. The tears are worth it! I give him gummy-bears as a reward for paying attention. It's 'wrong' but it WORKS!!! He learns when I do this! I also used to judge, especially before kids, when I was still a perfect parent. I think God put my son in my life to teach me about patience and perseverance, but mostly... to teach me how wrong it is to judge others. I'm going to have to follow you on FB now! =)

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