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.

Thursday, January 26, 2012

A year of yucky

An email to Emerson's teacher dated 1/26/2011-Exactly one year ago

"I think that it is just a phase that will loose its appeal after a
while. I think that he likes that it gets a reaction. It started because I told him that I
thought screaming was "yucky" and after that everything he doesn't like and some
things that he does, are ALL "yucky". I've been trying to ignore the behavior
at home to try and not give it any negative attention. He does seem to get
upset when you tell him that 'Emerson is yucky"...The way I look at it is, this is
a developmental stage that two year olds go through where everything is 'NO!' and if he
is finding his voice than that is good. It might be annoying now but I think he
doesn't usually stay stuck on thing for too long. :)"

HA Famous last words! (Oh, 'words', you have become my life) A year later "yucky is going long and strong. It is the most dedicated he has been in his whole life (almost 5 years of it) "Go to bed is yucky", "Stop singing. Singing is yucky", "No screaming, is yucky." "Sit on the potty is yucky", "I love you, is yucky." , "Go to school is YUCKY!!!!" even "yucky is yucky." And who taught him "yucky"?? Yep it was ME. I don't even have someone else to blame! Karma is certainly a bitch. I know I should be incredably happy that he is even talking, and don't get me wrong, I AM, but some days 'yucky' is gonna be the death of me. Where most kids go through terrible twos and all of the other typical phases, I'm gonna think back on this as the "year of yucky" I just hope I don't have to revise it to "years" Ha!

I'm Dumb. Yeah, you heard me, DUMB...potty training a child with HFA


Rewind: I was at the grocery store shopping. Both of my sons needed diapers My 3 month old and my almost 5 year old. Having to buy size 2 AND size 6(as well as pull ups) put into sharp relief that my boys were on the same level, at least in regard to toileting (or lack there of). I started doing the math looking for a deal; the top of the line diapers for the baby were about .25 a diaper. Okay that's fine. Then I did the math for Emerson's- .35 for the cheaper brand....WTH!! I don't really know why this bothered me. My son is autistic, I know that everything is going to take longer to learn, if it EVER gets learned. But for some reason It pissed me off! I left the store with NO pull ups and NO bigger diapers.

Emerson had a nasty diaper rash(maybe that is why I was pissed about diapers) After his bath I decided to let him go bare-bottomed to air out, free-range Emmy, and deal with an accident when it happened.... The rest of the week I just let him be naked after school (the rash was THAT bad) I kept taking him to the bathroom to sit on the toilet and try to get him to go. IT WAS HORRIBLE. He would spend the whole time screaming at me, getting aggressive, and I could feel myself loosing it. Spending months working on eye contact, years on talking, every moment on learning how to play and interact with others, those all pale in comparison to potty training. They seem like a walk in the park in comparison! (they weren't) I felt like giving up, so I sort of did. I was so frustrated that the thought of just cleaning up the mess after an accident seemed like an exceptable alternative to loosing it with my child and turning into REALLY mean mommy (I know, I suck)

So I'm sitting on the couch nursing the baby while Emerson is playing on the floor with his cars. I half heartedly ask him "Emmy, do you need to go to restroom time?" "No, I need play." Okay. 10 minutes later he gets up and runs to the bathroom and pees in the toilet- WHAT?!

Okay heres the part where I'm DUMB-

I've been trying to potty train my genius level five year old like he was a typical two year old. DUMB! Sitting in the bathroom over and over again was frustrating both of us because I was insulting his intelligence without even realizing it! He kept telling me he was done, because he didn't need to go. I thought he was just being stubborn. All of the other times we have tried he has been wearing underwear. Something about being completely 'free' made him more aware of when he needs to go. He is, like most autistic children, a creature of habit (understatement), Peeing in the pull up is just what we have done for 2 years and the diaper for the whole rest of his life before that. For a child that can read since he was 3 and count to the thousands, can navigate the internet like its a child's toy designed JUST for him, why did I think that he didn't understand the concept that pee goes into the toilet?? Why go to the bathroom when you can just pee in your pull up? I mean, isn't that what its there for? I guess I keep underestimating him and don't even realize it. He gets me trained on taking care of him in the easiest way possible but its the easiest for HIM. I guess this Mommy has been stuck in "babymode" and when you don't have social constraints, like not being interested in what your peers think, what incentive is there to be a "big kid"?

He keeps getting me with these "I'm Dumb" moments. He did the same thing when I discovered he could read.... 'I'M DUMB."

My sweet boy, maybe some day I will stop being DUMB and realize there is nothing you can't do! <3

Saturday, January 21, 2012

Aye aye Captain!

I think I will be DOMED to be called 'sir' by my almost 5 year old son forever! I keep telling him when he talks to ME it's "Yes ma'am" because I'm a girl.......Then I realized where has been hearing "yes sir" from recently. Damn you Netflix! Every single Star Trek series that this closet Trekkie has been watching and they call the women "sir" How can I possibly argue with that logic???
At first I thought it was just him and his gender confusion, then I realized it really was my fault when he started to say "Space...The final fronteer...." LOL