Tag Archives: network

I’m compiling a list….

10 Apr

This is the image that came with the frame, it has nothing to do with the following post.Of silly things that I believed or that happened to me along the way… The baldguy calls these types of things “the adventures of lil’ Bekka”… The list is of things that aren’t necessarily Asperger’s specific….

A list of incidents, some of them hilarious in retrospect….

My first one:  I spent a good part of my childhood living in the woods and we didn’t have cable.  We certainly were not roughing it, but there was a great deal of wooded land belonging to a nature preserve surrounding us. So we didn’t have cable.  I didn’t see most of the classic John Hughes movies until they showed up on regular network TV, with most language voice-over bleeped… Fudge or Flip instead of Fu%$.  I didn’t realize until a couple of years ago (two years past thirty) that this was the case, I thought it was hilarious that these onscreen characters used regular words instead of swearing.

So of course, when I would quote the movies, trying to make a wee social inlet, I would always be quoting them wrong… Needless to say, most of the kids in the areas we lived in had cable (and were often shocked to find out that we didn’t) and they didn’t get my reference, only that this weirdo new kid was really bad at paraphrasing pop culture.

I remember my mother trying to teach me to speak more “properly”  and was making me do the whole pronouncing the “h” first in wh words like “over hwelm”. Needless to say, my new dialect went over like a lead balloon in the 8th grade social scene.

I remember thinking that McDonald’s was a family business.  The animals for the meat were sent to McDonald’s kitchens by Old McDonald’s Farm. I had not seen the farm MacD/McD written when I came up with this theory.  Of course, being very literal, I kept thinking about this when I read Animal Farm for the first time (hey, if you don’t know what it’s about it’s an interesting and occasionally charming story about a community of farm animals and nothing more…this is why it shouldn’t be given as summer reading to 11 year olds.)…  I think I may have volunteered “I don’t think they were sending Boxer to the glue factory, but to McDonald’s instead” to the conversation once school resumed.   I should have been wearing a helmet, what with all of the lead balloons I was apparently carrying about.

But the most horrifying and dramatic one happened in 5th grade.  We were being shipped to the middle school for a day for a sort of peer orientation.  A couple of days before we were given a slip of paper with the name of a 6th grader who would be our guide through a day in the life of middle school.  My person’s name was possibly the most Greek name in the history of the world.  When I got home, my mom told me that my guide was probably new to our country and I should make her feel at home by learning about the history of her land and culture.  So I sat down to read information on Greece from our ancient, outdated encyclopedias.  The next day I was positive that I would be making a connection with this Greek guide-ess, because I did exactly what my mother suggested.  Well, when I met her she was like any other kid in the class. Her heritage was Greek, her grandparents may have been the first generation here in the US, and despite my many enthusiastic attempts to talk about something we both theoretically had knowledge of (all things Greek), she continued to look a little puzzled every time I opened my mouth and I don’t think she ever spoke to me again.

Those encyclopedias were classics though… I believe they were published in the early 60’s, so by the 1980’s they were fairly outdated, but still they were my only source of information for writing papers for school. After all, children, this was pre-internet.  For some reason I thought the library was for people who were not fortunate enough to own their own set of encyclopedias.  As my folks weren’t involved in my academics aside from comparing me to cousins and family friends and pointing out my foibles and failures, I was responsible for figuring out what and how I was supposed to get by.  I didn’t know until high school that there were techniques for structuring essays (clearly I have disregarded them in my adulthood, my apologies) or methods by which to gather information.  If I had been an alien from another planet, observing human life, I would have incorrectly assumed that essays are written by yelling and shaking a fist in the air and throwing desk accessories and walls and people, while the younger member of the species sits in a chair, head hung low, and smudges the paper with pencil and tears and eraser dingles.   I am so grateful, now, that I have these memories though, as I remember writing endless papers (yeah, there is a surprise) and reading the encyclopedias from cover to cover (starting at age 4) and now it is so clear why all of my papers were returned with red question marks next to every fact.  It just took me a long time to grasp that information provided by parents is not always 100% accurate.  It took the challenge of educating my own child, for me to realize the important of accurate and up to date information to be used for academic purposes, and also where it was ok to to make some things up along the way.

Anyone want to share some of their childhood silliness?  Promise I’ll laugh but only if you do!

xo

B

Vacation to Normal…

21 Oct

Alex in his hat….

Originally uploaded by CleverGirlBek

Our child and our life together as a family are not normal, average, or regular. It’s freaking hard people. I don’t want to hear about the sunny side. I don’t want to hear about how so and so’s kid was cured or how my kid looks normal or seems normal to you. I don’t want to hear how normal is boring. I crave boring. I love my child. But a day of boring. A day of regular. A day of normal, with Alex present and active, would be the most extravagant outrageous vacation we could ever imagine. Sure, we’d get to the end of the vacation and we’d probably say we were glad to be heading home, but we would have had fun in normal, regular, boring while we were there. We had a day of relative “normal” on Sunday…But it was a brief snapshot… I hope to see it again and more frequently, but of course it is the day to day that is important right now. I wouldn’t say it was totally normal, but we could see the progress over the past year. My son is 5. He went on his first motorized amusement ride on Sunday. He didn’t lose his shit or scream or yell or stand up or climb out while it was in motion. He didn’t even seem to notice it was moving and tilting. They had a bubble machine in the middle and he just stared at the bubbles and tried to catch them from his seat. Those bubbles weren’t there for the other kids who like the round and round and the wind and the tilt, they were there for my kid so he could handle the round and round and continue having a great day. I almost hugged the ride operator. But I would have had to explain…And I didn’t want to bring on the tears or they would have never stopped because I am just overwhelmed and tired…

This is a picture of him in his oktoberfest hat…We get him a new pin every year… The backpack has his weighted vest in it..He is sensitive about it lately- we are rapidly speeding past the age where special was good and it was ok, to him, to be different…He notices the differences now, and he isn’t happy about them…So the vest goes in the backpack where Alex thinks it’s ready if he needs it, meanwhile it helps him as the weight is still being applied… (it’s light, only around 2lbs)

After five years of being told or at least hinted to that we look too deep, overanalyze, and/or are paranoid people, it is nice to have the validation given by the objective test results. There is something going on. It’s not our fault, but it does not exist independent of us and it’s up to us to make a difference. Any difference.
A very dear friend once described life after a tragedy as “the new normal”….
I would love to apply that here but the reality is that the majority of this has been normal for so long that it can no longer be described as new. There are new parts. But this stuff isn’t a shock, it’s a relief in some ways, a jumping off point… It’s not like he was diagnosed with something like a tumor that we didn’t know was there but it has been hurting him…This wasn’t something that happened overnight…

I do wish that people (professionals and non-professionals) had not spat our observations out the way that they did. Even one person we trusted saying “if you are worried, here’s here you need to look” or “you know your child best” could have gotten Alex help much sooner. We have been reassured since his birth that “this is how kids act” or told we were paranoid. This has never served us well. This is our first time around. I feel like a jerk for trusting and confiding in professionals and non-professionals rather than just going with my gut. But going with my gut led me to those professionals (general pediatrician, etc) and they shot everything down with a “he looks fine to me”…. Not that his test results are black and white- oh no, not my kid…That would be too easy… But our concerns were valid, and they were signals, red flags, and they were largely ignored and belittled. This is the anger part for me. The last time I was in his peds office when he had a fever and was acting strange I explained to the ped who was handling urgent care for the office that Alex doesn’t climb things and he is ground bound and doesn’t even like climbing up on his bed, but other than the low grade fever the only other symptom he had was that he was climbing things- barstools, counters, bookshelves. She looked at me like my face had suddenly morphed into a pile of turds and said “You do know he is a 5 year old boy and that’s what 5 year old boys do.”

But not my 5 year old boy. It was odd behavior for my child.

I have had it up to my eyeballs with doctors seeing all children as the same and fearing helping a child. I also think if 5% of a parent’s intuition or concerns were actually heard and processed and considered, so many kids could be helped.

For now there is enough clarity to spin new threads of inquiry, of questioning.
There is not enough to thoroughly research but there is enough to investigate therapies for associated issues, general issues, so that we can begin helping our son in a more focused manner.
But there is not enough to buy a pile of books with specific names, but we can take them out at the library but I still feel like we are hiding, like without a definite diagnosis (and I understand there are benefits to not having a diagnosis, but those are starting to really dim for me these days) we can’t officially belong.
On the other hand, some very wise and generous women with kids who are, in many ways, like my own child, have welcomed me with grace and understanding and because they have been where I am today the conversations and emotion come like a tsunami. Our situation is unique, and in the grand scheme of things and just statistically in the world population, our experience is so very unique to the point of isolation. But with the kindness and openness of these warrior mamas, I finally feel like we are less of a freakshow and for the first time it feels like I might be able to talk to someone without being told what I am doing wrong or that I have to be strong and not cry. The details and diagnoses are very specific; the stories are universal. I used to cry after hearing or reading a show or article about a parent and their child, and that child’s challenges. I now cry out of relief because I know we are not alone.
I am finally finding the strength to speak up for my child. The anger and frustration of those who judge, both strangers and family, infuriates me. Part of me longs to educate, as I have had to do many times on my behalf.
But I’m exhausted. When I am in public or broken down enough that I collapse on the shoulder of my most critical family member, knowing that I will be criticized, that I need a formula to choose my words wisely but with strength. It is difficult with a screaming child, to explain to the stranger, that a spanking or a “good whooping” will not do a thing because this is a neurological issue. It’s not a bad thing, it’s not a good thing. Whatever this thing is it is a fact. I long for that fact.
I have decided that once we have a single word to describe the why that I will have to screenprint some cards with more information. The old man at the store who tells me his sons would have never gotten away with this sort of behavior will get a card. My mother, who when we first mentioned that Alex had a visit with a new neurologist, will get one when she responds that she notices a certain abnormal behavior but only in response to me and that if Alex spent an hour with her every week (instead of the professionals who help him) that he would be normal and cured. I wish I could slap them across the face. I know that wouldn’t solve anything. I know that would most definitely not be a positive example for Alex. But I want that ice water over the head, that smack across the face, that maybe they will learn to shut their mouths when they just don’t know. If that old man (for example…could be anyone, but the 70+ male crown tends to be the most blunt and rude) realized that there are unseen things in the world and they shouldn’t judge (although the thing about old dogs and new tricks comes to mind, I have been proven wrong once or twice), then maybe the next mama struggling at the store with her kid and his raw nerves and communication issues would not have to get all of the tears out in the car so her eyes won’t be blurry on the drive home. So maybe that mama could venture out for more than just milk and toilet paper without being judged and maybe solutions could be found in those outing than are not as visible in a controlled, home environment.
My parents constantly tell me that I am too sensitive. At the end of a long day, with many struggles, where not one simple activity is accomplished with ease, I don’t think anyone who cries because someone judges them in a most disrespectful and ignorant manner, is sensitive. I think they are human. For me it’s that reiteration that we don’t fit in. Now we are finding that we do fit in, just not in any actual, physical place with any consistency. But we now have the connection to others with similar quirks and traits and disorders, who even though they may be on different continents or thousands of miles away, help us feel accepted….
It also floors me that we are spending so much time one social skills and social stories, yet on some days I feel like Alex has more of a grasp on it then the “well meaning” adults we encounter.
So please, if you read this far, please give people the benefit of the doubt. There are many things which are unseen and many of us who have mountains of challenges, with more challenges piled on top of the first mountain’s worth. Instead of assuming you have the cure, the answer, or the key to our salvation please take a breath and ask if you were having trouble walking with a cane and balancing the milk and bread in the other arm- what would be helpful to you? A comment about how you walk too slow? No. Ask if you can help carry something for us. If you don’t want to help. Kindly zip it. If you see an exhausted mom with a screaming kid (who isn’t screaming “help” or “this is not my mom” but generally yelling and screaming and crying, please wave and say hello. His name is Alex and I am Bek. It’s nice to meet you.

(I swear I will go back to my regular blog entries soon…We are in the immersion phase of planning and implementing… I get ½ an hour in the afternoon when I just finally start to crack but I am still somewhat coherent… Hugs all around…)

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