Tag Archives: disorder

Huh? What?

11 Oct

Sandy over at AspieTeacher.com (an amazing blog by an amazing woman…If you are, know, or teach an Aspie then it is an incredible resource… If you just want to know more about life with Asperger’s, then what are you waiting for? Head on over!

She wrote a great piece (and I apologize for only getting to it now) on Auditory Processing Disorder that expresses her experience with APD and Asperger’s.

I don’t talk about my experiences with Asperger’s that often, at least here.  Perhaps I should start doing so, as it has come to light that I have been harshly criticized by people who should know better, but for some reason, don’t.  Perhaps I need to stop giving people the benefit of the doubt, as the favor is rarely returned even when it is an extremely reasonable accommodation, causing little to no discomfort or inconvenience to the party on the other side of the communique. .

I do talk quite a bit about raising a child with Asperger’s, as I find some of my issues are challenging to explain, and sometimes I feel like a freak (and not in a jovial “hey, I’m embracing my freakdom” sort of way)… That is until I find that there are plenty of bloggers out there (and non-web based authors) who do talk about it and I realize that I’m not alone, and I’m not just some weirdo who (in the case of CAPD) can’t properly communicate with the ease of sending words and receiving them verbally and aurally.   I need time and space and often paper or my keyboard or a dark, quiet room to digest what I have heard and piece together an appropriate reply.  I need visuals to understand auditory input.  I produce visuals to respond (I type really fast and thankfully while my grip is weak and I can barely pincer-grasp/hold these days, my typing has not been impacted, though I can’t do it when the rest of me is *that* exhausted, I still can do it when I’m heading to that point, when my voice fails me). I watch TV with closed captioning on and the volume up so I can hear clearly (as long as there is no other sound in the house.  Even someone talking in the other room means I cannot focus my hearing on the TV’s sound as everything comes in at the same volume, it’s like sounds competing with each other.  It’s exhausting.  To do anything that doesn’t involve sound as an integral part of the activity, I wear earplugs or sound dampening headphones.  Simply being in the next room while baldguy helps Alex with his homework can be information overload for me, even though I am not participating, it’s like my brain just keeps absorbing and things get mashed up and jumbled and it exhausts me.  Daily sounds are a constant assault and basic things like the dishwasher and the dryer, even the coffee maker and the air conditioner, have me putting up my defenses the moment their sounds are audible.  My defense mechanism seems to be sleep.  Thursdays I can’t even begin to wake up until after 11am, as the landscapers are electrically pruning and mowing the communal areas of our development and *yawn*

With a small and now a not-so-small child around, it was hard to just pop in a pair of earplugs, and I often just gave up on doing anything that wasn’t Alex’s immediate activity-focused.  As most parents of children on the spectrum know, we rely so heavily on our senses to track our children.  We still have baby locks on doors in our home, not because Mr. Smartypants can’t figure them out, but because they do make some sound when a breach is attempted, and that sound can be just enough warning to jump into action.  Thankfully, Alex is not a runner (or a climber). Unfortunately, we usually don’t realize he is getting sick with a fever or ear infection until he starts climbing and totally loses his sense of danger (when he’s well he is the safety captain of our home), so we rely on little auditory and visual clues and a few extra seconds have, in the past, meant avoiding injury or worse.

Baldguy’s two year stint at home has meant that the time when I was once able to control the flux of sound in my environment, when Alex was at school for a couple of hours in the morning, disappeared instantly.   Here we are, more than two years since Jeff lost his job, and I still am distracted by the sound of his chair squeaking or the laundry being run during daylight.   Telephones have been off limits as I cannot focus enough to even process the bare minimum if there is extraneous sound, and I’m on edge at the potential of a distracting sound to the point where I can’t even make a word budge out of my mouth.  It’s frustrating.  It was isolating, but thankfully family and friends are on Facebook for the most part, so I am able to connect in a way that allows me the accommodations  I need, and blogging has also given me a place to put the words that I cannot speak.  The blogged stuff isn’t so much about what I can’t verbally express but it gives me a place to hopefully start a new conversation, albeit one that happens “virtually” and with the typed word.  Writing things down has been a trend since I started being aware of the changes in my auditory processing.  Oddly,  CAPD hasn’t been something I have had since birth, but rather something that seems to have  been caused by other events in my physiology.  Though perhaps I am mistaken and I was just unaware of the difficulty and compensated, under my own radar,  in my earlier years.  Who knows. All I know is what is on my plate now, and if nothing else has been learned over the past 34 years, I have certainly learned to adapt.

I toyed with the idea of adding a CapTel phone, and then the online version that Sprint offers, but that still wouldn’t give me the tools to respond the way I need to.  Email and Facebook private messaging seems more logical as I can digest the information and reply appropriately.  On some days I don’t even log on, I usually pop in for a few minutes, in the midst of the constant tasks surrounding Alex and my therapies and keeping him fed these days.  Communicating this way allows me to communicate effectively, as though I do not have CAPD and as though I do not have Asperger’s.  I don’t text because I don’t have a cell phone.  What?  You heard/read me!  Ok, I have one, but it is for emergencies and thus far I have tallied up a great deal of roll over minutes (on my Virgin pay as you go plan) that I will never use on my little old phone that can’t even go online because it is only slightly more modern than the old brick phones.  The only reason I would want never technology on a cell phone is so I could have a handy camera with me, but then I’d have to take the phone with me, and in this current status I have no idea where it is.  I’m sure it’s plugged in and charging somewhere and if we had to evacuate for a hurricane I’d surely locate it.  I hope.

But I will always be grateful for this technology, allowing me to be somewhat functional in the world, even when I can’t get out of bed, or I can’t get the words out in a spoken form.   I will always be grateful for the community of people who shift focus away from what I can’t do and look at what I can do(preferably not noticing that I may take notes during casual conversation or that I look at their mouths when they talk yet I’m not big on eye contact, especially when I am trying to figure out how to get my words out).  That is my hope for Alex in the future, that people see that amazing person that he is and any deficits are not even noticed as they are part of the whole package of awesome that he truly is.  For me?  All I want is the benefit of the doubt and acceptance. On some days it really seems like that is too much to ask and communication goes haywire, but in the 99% of the time when it does work it is nothing short of miraculous.

Anyway… The picture above is Alex with his gigantic headphones that he uses for his listening therapy (which I will be starting soon and it may help my CAPD.  It has definitely helped Alex.  I will blog about that in the future)… The review of the headphones said “these are not made for people with normal size heads!  these are for people with abnormally giant heads” which I guess was intended as a negative review, but that comment was definitely a major selling point for us as we all have very large heads…

More tomorrow…

xo

B
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Red Blood Cell vs The Bad Guys

4 Oct

Yee-haw.

Ok, not really exciting. Or at least not exciting to most of you… I was trying to explain to Alex what happens between exposure to a trigger substance and the hemolytic anemia part of G6PD Deficiency.

So I told him that the bad stuff makes them explode.

That got his attention.

Eventually, he’ll know the scientific terms for the process, but the idea of cells exploding and making him feel sick is enough to keep him hyper-vigilant over what is safe to eat.   Of course, being my sweet little hyper-focused Aspie with a splash of OCD in there, he triple checks everything that I (a hyper-focused Aspie with obsessive attention to detail) have already quadruple checked.  I told him that I would not put anything in his lunch box that is on the “bad stuff list” and he came home twice that week with some lunch items uneaten because he had questions about the ingredients.  I reaffirmed that I am staying on top of it, but at the same time I am enormously proud that he is this committed to protecting his own health.

Anyway, above is  a picture he drew in his school journal this week, and here is the text that accompanied it…

More on our adventures with G6PD Deficiency coming soon…. The best page I have found, so far, as G6PDDeficiency.org.  There are plenty of general info pages, and a couple of information sites, but I find G6PDDeficiency.org to have the most real life information that doesn’t rely on the stereotypes promoted by early research (important research, but one that prevents diagnosis, in my opinion, when it is the only very incomplete version being passed around to this day).

xo

Bek
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Ode to Joy…

3 Jan

Not what it seems…

Originally uploaded by CleverGirlBek

Boy loves music. LOVES it.
Making it, listening to it…

Obsesses over it…

This month his heart song is “Ode to Joy”…So for Christmas I made him a mix of 14 versions of Ode to Joy that I downloaded from iTunes…
There’s a version done with power tools, the traditional choral and symphonic versions, 80’s synth, bagpipes, and didgeridoo…

He listens to it on repeat while he rests and sleeps… He walks around the house during the day singing it (the musical notes…he has perfect pitch and can repeat anything he has heard once with eerie precision)…

In this photo he is wearing what looks like headphones- they are actually sound muffs/hearing protectors… They don’t put one in a sound-free environment, instead they dampen nuisance sound fairly well…Thanks to these we no longer have to be as neurotically strategic about vacuuming or blender use…The day we got these I used the dustbuster, the regular vacuum, and I pureed some stuff. WITH BOY IN THE HOUSE and he was happy as a clam… These are actually for the supermarket which is one of the places he avoids like the plague because it’s sensory overload for him…

Anyway, in this photo it looks like he’s “conducting” the music in his ‘phones, but really he’s conducting the music in his soul (while trying to fit himself in a box from Amazon.com…. he wanted it to be his personal time machine but the “doors” didn’t close him in completely so he decided that time travel would not be safe in this box and he is now eagerly awaiting visits from UPS (more than usual)…

Oh, and before I sign off, I must recommend “Not a Box” (and “Not a Stick”)…  A wonderful and simple picture book on using a box (it’s not a box, it’s a ….) creatively… Really helped kiddo think, um, outside the box (he’s pretty inflexible, in general, so this was a huge step for him…)

Hope the New Year is sparkling for all of  you…

xo

b

ps.  I’m on twitter these days… Stop on by… CleverIndie on Twitter

Labels.

13 Dec

Staying Dry.

Originally uploaded by CleverGirlBek

Here is Alex…It was raining hard when he came home from school. He wanted to play out on our lanai. I talked him through finding a towel and how he would use it to dry his feet when they got wet on the lanai.

So he put the towel down on the wet lanai and shuffled around outside with his feet tucked into it. He got soaked. The towel? Soaked.

I realize now that I didn’t walk him through and show him: where to put the towel, the precise sequence of events from putting the towel down as a mat, through every detailed movement of his spontaneous play outside, and eventually over to the mat, nice and warm inside the house, to dry his feet.

Because that’s what he needs. Precision. He is intensely rule based and fairly non-flexible.

But he’s wonderful.

But I’m exhausted.

Anyway.

What I want to talk about today is labels.

Alex has a label now. It’s not a precise label, it’s very broad for now, but we now have a label. For us a label is a tool, it is for communication and for research to find the help we need to help him have a happy and healthy life.

So here is my assignment for you. Close your eyes and think what either of the following word means to you. Embrace your interpretation. Then scroll down. (If you would like to, you may anonymously share your initial thoughts in the comments area….don’t worry you will not be judged…I went through this…I’m still going through this….)

Autism.

Ok. Here is the DSM IV (from NIH)/Diagnostic Criteria for Autism and Asperger’s…. Please read them carefully…

Diagnostic Criteria for 299.00 Autistic Disorder

1. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
1. qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity
2. qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
3. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

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Diagnostic Criteria for 299.80 Asperger’s Disorder

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity
2. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
3. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Looking at the criteria, has your view on what Autism means changed?

I know mine did.

If you are a parent with a kid with PDD of any type- what was your crash course like? What has your experience been with other people understanding even the basics of autism and what it means?
With the amount of Autism news everywhere, I’m amazed that the news outlets virtually never cover the criteria. I get that the human interest story is the child who has the most symptoms and the most impairment, or the greatest non-autism hardship that affects their autism, or their family’s ability to provide for them and their special needs. i really do understand that… But the focus completely on the human interest side, and the lack of an explanation of what autism is, without delving into severity, is doing a great disservice to many children. My dad insists that nobody thinks that autism is really bad parenting and lack of discipline. Then again, he doesn’t read the comments after articles online and he has never been to Target and experienced the full-on Alex fallout because the kid can’t handle the lights and sounds. He has never been there when an old man informs me that “a good beating” would fix Alex because that’s what worked on his kids… And this isn’t just one experience. It is many. Those people are out there. I am grateful that I can express the why to the judgmental butt-inski’s of the world with one word.

And I am reminded (and I have to find the source of the quote) of the mom on a message board that said, to the “well meaning” stranger, “If a kid had cancer would you try to spank it out of him?”

Many people see autism in two ways, there’s the “all autism looks like Rainman. If the kid isn’t acting like Rainman, it’s clearly a discipline problem.” (by the way, you can read about Kim Peek, who was the inspiration for Rainman, on Wikipedia http://en.wikipedia.org/wiki/Kim_Peek)…

And there are the people who see it as purely a discipline problem. (and people like Dennis Leary. I will not get into that at this time.)

And then there are the people who live with it every single second of every single day, be it their own or their child’s or their patients (does not apply to all doctors…we have found that out…We are just learning, yet by reading the basics we seem to know more than some of the physicians)…

So when I use a label to explain something my kid does, please don’t assume or treat us like we are:
1. Trying to restrict our child’s success in life.
Pretending this doesn’t exist is cruel and more restrictive than a true label.

2. Looking for a problem.
We are not looking for a problem. It is there. This didn’t happen overnight. We have known our child for almost 5.5 years. Frankly, we are greater experts in Alex than anyone reading this. We, with the help of family, friends, and a few undereducated professionals, gave the benefit of the doubt too many times. That has delayed helping him in such a dramatic way that has made his treatment more complicated, exhausted all of us, and worse, it has damaged his self-esteem.

3. Restricting him from enjoying life.
We are working hard with Alex so that he may enjoy life, understand it, and not be so scared of things like moderate to loud sounds and the lights at the grocery store. We do not restrict him from anything. Alex requires extra effort from us to keep him safe, due to various issues. This is not us being paranoid. It is us being responsible and keeping our child alive. When he was a preemie, someone with a cold could have infected him and killed him. Now that he is 5, the safety issues are different, but he requires the same vigilance. He falls down and gets hurt (frequently. the child is blessed with my physical grace.), he gets sick from playing with the kid with the snotty river drying on his face at school. We want Alex to have the ability to make good choices for himself in life, so he can experience more and give more to the world. Keeping him alive and giving him the tools he needs to even just have a back and forth conversation are important parts of this. We are not restricting him, we are helping him explore his world. If you need further description, what may appear as restriction to an outsider (anyone who doesn’t live with this every day) is actually comparable to providing a wheelchair bound person with a ramp. We are giving Alex his ramp.

4. Bad parents.
We take this parenting thing very seriously and because of Alex’s needs, we also do work harder at parenting and learning to be better parents, than many folks (not all by any means, and everyone has their *thing*) who have an average or neurotypical kid who just needs the basics (love, food, basic health care, clothing, and a roof over their head). We also have to be teachers, occupational therapists, physical therapists, speech therapists, detectives, physicians, psychologists, behavioral specialists, nutritionists, project managers, and schedule everything with the precision of a railway scheduler/conductor.
So before you judge us to be bad parents, or suggest we “just love him”, know what you are judging and in most cases, know that you have only read the brochure about this land we inhabit, you have never been there or even seen the extensive slide show or even checked Amazon to see if there is a Fodor’s or Lonely Planet guide for our world.

Anyway, enough of my babble. I guess I just want everyone to listen before they judge. (and yes, I have both complete strangers and someone close to me in mind when writing this)…. Learn before you preach.

I also find that the people who lecture on labels and applying them to anyone, are people who have never had anything in their lives that are worthy of a label. Most people who have a label (and to clarify I’m not talking about labels thrown around in name calling and derogatory fashion…I’m talking about labels to describe a fact.) understand how necessary and helpful they are….

Hugs all around…
B

(by the way, in case I didn’t mention it in my lengthy entry, Alex has PDD-an extremely broad label that contains Autism and other disorders….We are 99.9% sure he has Asperger’s… You can check out WrongPlanet.org for more info on Asperger’s…)

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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