Tag Archives: support

Sample in a Jar.

31 Mar

So much is going on around me, and in my brain, while my body does little but sleep even when the rest of me appears to be awake.  So tired, battling another fever and the unrelenting pull of deep sleep.  Thankfully though, my body seems to have rebounded from the bad reaction (an unhappy liver) from the last RA medicine on the list that will not send me into severe anemia or make me swell up like a puffer fish.  Or I should say, more like a puffer fish.  I’ve got the moon face prednisone thing going on full force but the rest of me is shrinking while I sleep, not that I mind as I have plenty of cushioning provided by years of stress, medications, and finding an enemy in food as so many foods just require too much thought to eat them and cover them with all of the variables that impact my ability to utilize nutrients without running too sweet or too low because some other variable didn’t occur to me and the thought of having to prepare anything, combined with weakened and stiff hands and vertigo, usually is enough to send me back to sleep or weigh me down with a heavy enough blanket that I won’t wander off to find something.  This isn’t new.  Actually, over the past few weeks I have been eating more and eating better than the past couple of years, and I dropped 15lbs.  I just wish I had the energy to go with it and I really just hate being this sick all of the time.  I hate not being able to do as much as I want to do for Alex and we don’t get to play together much. Though we have been catching up on movies, and episodes of Little House and the occasional episode of The Golden Girls (he thinks the girls are hilarious).

We are in survival mode thanks to his Dad’s new job, and I spend all of the time when Alex is in school sleeping, but I am getting to spend more time having quiet talks and reading with him.  It blows my mind that two years ago he couldn’t tell us the “story” of his day and he mostly spoke in quotes from tv shows and recited lines from books, and now he is just a constant stream of chatter (mostly about 1980’s video games- his latest special interest) and he often shares little tidbits about his day as he’s snuggling into bed for the night.  He’s an amazing little boy and the sweetest kid ever.  I said to him “I’m sorry I’m so sick all of the time.  I just want to have enough energy to play and help you.” and he tells me not to apologize because it’s not my fault and that the stuff I can do to help him and play with him makes me the best Mama ever.  I imagine that even without Asperger’s we’d be so close, but I do believe that we are closer because in some ways we are like two exchange students who speak the same language, in a foreign land where nobody speaks their language.  It’s frustrating sometimes, but more often than not we both find so much joy in our unique neurobiology.

Though lately, it is the “other” that has been on my mind too, as I feverishly clip blog bits and news pieces to Evernote for focused viewing when I can glue them together in a meaningful form.  I hate how non-sick people just don’t get it and offer criticism instead of sympathy or empathy or what all of us people living with degenerative and debilitating illness really would like- to be treated kindly and to be given the benefit of the doubt on occasion.  So here are my suggestions for non-sick people who just don’t freaking get it.

Don’t be an asshole because I self-advocate.

Don’t assume that I am negative because I mention chemo on occasion or a medication or physical therapy.

My poor health and my communicating about my experiences (some of them are damn funny, some are poignant, very few are depressing in the grand scheme of things because this being sick thing isn’t a choice, it’s not a personality defect, it’s a body rebelling against itself for unknown reasons that started when I was less than 2 years old. I would be negative and probably go some version of off the deep end if I didn’t talk about it.)

Don’t assume that nobody wants to read about my experiences, you’d be surprised how many of my dearest friends and I have found each other because of our own personal wars.  Don’t shit on veterans for talking about their war, especially if you are too young or too healthy to have been enlisted.

Don’t be an asshole because I communicate with other people like me and you overhear the conversation through the din of social networking.

Don’t be an ass and assume that because I can type a few words once a day (or in the case of my blog lately, once every 2 months or so…I am always thinking about my blog and you, dear reader, even if I haven’t been nearly as prolific as I would like) that I can do anything else.

It’s all about the spoons.

Go ahead and be a selfish turd because you feel that I don’t try hard enough or I don’t put the effort into relationships.  Totally ignore the fact that my abilities and my availability depend so much more on current technologies than the old school methods you feel are “real communication”.  I’m sure people thought the telegraph and telephone were the devil’s playthings, but times they are a changin’ and as much as some like to criticize social networking (typically those who have a very singular and narcissistic and selfish perspective on how they believe everyone else should use it) there are those of us that find Facebook to be a life line and for many of us, it’s not the way we used to do things, but it’s the way we do things now and for those of us who have communication disorders, hearing or speech impairment, are caregivers and/or insomniacs, or just don’t know when we’ll have the time and energy to pick up a phone or if we can even get to the phone if you return our call.

So go ahead, demand that the person in your life who is managing illness use their few precious spoons to call you because you don’t know what it is like to have limited spoons and you don’t know the snowball effect that using up spoons to fast can have on that person, their health, their kids, their home, their job… If you do communicate with them, however briefly, via any social network, just be a judgmental ass and say that the person’s “friends” aren’t real friends because they aren’t live and in person and standing in the same room chatting.  Most of us that do prefer this method of communication, due to illness or disability or caregiving and treatment schedules, have been betrayed by our own bodies. For many, social networks are a way to stay alive, be buoyed by shared experiences, be entertained, keep in touch and banish the loneliness that can come when you can’t drive, are stabbed by sunlight, have trouble walking, take medications that alter your ability to operate heavy machinery or even remember to put your pants on before you leave the house to get the mail.

I was just shocked at how much I read over the past couple of weeks about people with any chronic, debilitating illness or any deficit impact communication via any method, all having experiences with complete jerks who say really stupid things about our challenges.

Then again, there are those that see the true beings beneath the scratched and dented exteriors, behind the assistive technologies, and within the neurological differences.  Those people are the ones who are the real friends, and it has nothing to do with geographic proximity and everything to do with mutual respect and love and the understanding that some people find triumph in getting an A in a class, some people find it in getting a promotion or a new car, but some of us get to see the beauty in everyday things and the little triumphs that are hard won and brushed aside by many able-bodied souls.  I’d love to be in the position to post status updates about keeping up and surpassing the Jones’ (actually, I probably wouldn’t) or feeling like posting what I ate for lunch or that I’m out and about for a mani-pedi and lunch with friends is important news to share.  But my life is more complex than that. My friends, my true friends, celebrate the little victories with me, and I rejoice with them when they find their little triumphs.  So it’s not “my BLT is repeating on me” or “what color should they do my nails?” but for us the posts about getting through another treatment (or finishing a treatment and getting fantastic labs back!), or having a morning where we felt so good that we sat outside and read a book or that a loved one did something really sweet for us, or for the parents of special needs kids- when our kid reaches one of those little teeny goals that we would have never even considered a goal until we entered this strange and wonderful and brutally hard world of raising a special needs kid to be their best.  That’s not negative.  That’s amazing.

It feels damn good when something happens that means more hope or progress or even just a good laugh.   It feels shitty when other people, who cannot begin to imagine (or can’t even feign empathy or just keep their mouths/fingers still) decide to drop a steamer on these little joys and little pieces of hope that are sweet nectar to those of us who have known and seen the worst in our physical selves, emotions, and in others.

That’s all.  End rant.  Soapbox being sent out for repairs.  Oh who am I kidding, it’s just going to the garage with the other stuff that I will fix one day when I am up to it.  I just wanted to put this out there,  in hopes that anyone who has been critical of an ill person in their lives, because of what they can no longer do or do differently, will be more mindful if they cannot grasp they why or how.  I also wanted to put this out there to remind my fellow beings out there who are feeling muted or lonely that many of us have been there and many of us won’t disappear when the world gets in your way or your body protests everything.

I will post resources and links about communication and relationships when living with chronic illness, or coming to grips with a loved one’s chronic illness, as I find them.  I would love if folks would add their experiences and any links or resources they have found helpful, in the comments section.

For now I’ll leave you with one that just makes me feel less like a patient and more like the Chronic Babe that I am.  Of course, that is the fantastic ChronicBabe.com (be sure to sign up for the ChronicBabe Goody Bag!  It’s a joy to read the email/newsletter and it puts the spring back in my…um in my hair. And eventually my step.  Fingers stuck in crossed position.

xo,

B

Now I Lay Me Down To Sleep…

6 Mar
3 days old, first time I was allowed to hold him....

3 days old, first time I was allowed to hold him....

(I chose these image from the NICU… They don’t quite feel like a fit for the post but they kept hollering at me..)

I can only imagine how it feels to lose a baby.  Even during our ten days in the NICU, the deaths of the tiny patients were not spoken of, for us outside that baby’s family, it was marked by the absense of an isolet or incubator that was crowded with doctors and loved ones only hours before.  We knew, all the parents knew, that we were fortunate as it wasn’t our baby. But it could be. In the NICU the emotional stew that you live in is a lifetime of emotion and stress in a matter of weeks or months…It’s a lifetime compacted into a tiny room and a tiny plastic box with portholes, wires, tubes, and distressing alarms.

A little over 24 hours old...Finally got to see his face in person (the nurses gave me a polariod to have in my room a few floors away while I got the rest of my IVs)

A little over 24 hours old...Finally got to see his face in person (the nurses gave me a polariod to have in my room a few floors away while I got the rest of my IVs)

But we were lucky.  I don’t think I will ever forget how lucky we were that Alex was ok. My mother was annoyed when I mentioned other babies in the NICU, who were there before Alex and stayed long after he came home, or who “disappeared” overnight-focus on happiness, she would tell me.  I truly believe that the stark contrast of what we had, and what could have been- what was a reality for many people, makes me appreciate Alex’s survival much more.

Since Alex’s birth and many changes in the life of our family, I have, in my journey, seen friends and family lose children at all stages of development, at all ages.

I can only imagine the loss of a child. I am grateful that I can only imagine it.  Perhaps I am not imagining it accurately, but I know my love for my son, and how the possibility of losing him has felt, and the helpless, drowning sensation that his distress, prematurity,and neuro issues, and the two miscarriages before my pregnancy with him, have impacted me on so many levels…  I can only extrapolate and the place where I wind up is stifling, hot and humid, very dimly lit…I imagine it to be like a vat of a viscous substance- like molasses- drowning, muscles aching as they try to move, there are no words, but by some cruelty you can still breathe, even if it’s hard and physically hurts….I can only imagine that the reality is much more terrible that what I can imagine. My heart goes out to anyone who has experienced the loss of a child, their baby, at any age or stage.

My cousins Aimee and Julie, just introduced me to an amazing organization that helps parents who are facing the death of their baby remember their child.  The site for Now I Lay Me Down To Sleep has much more detail about the program.  Here’s a paste from their about me:

“This is the place where the Now I Lay Me Down to Sleep Foundation gently provides a helping hand and a healing heart. For families overcome by grief and pain, the idea of photographing their baby may not immediately occur to them. Offering gentle and beautiful photography services in a compassionate and sensitive manner is the heart of this organization. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives.”

I checked out the site and I really wanted to help, to honor the families that I know that have lost a baby, which is why I’m trying to help spread the word…

They are currently running a fundraiser to support the NILMDTS mission. Our cousin Jaime  is participating in a national model competition that benefits NILMDTS.   Please consider visiting the image gallery and voting for our lovely Miss Jaime while supporting a wonderful cause.

You can see Jaime’s picture and vote for her by visiting:

National Charity Model Search benefitting NILMDTS

Every vote cost $1.00 and every dollar goes to a charity group close to our hearts, Now I Lay Me Down to Sleep (www.nilmdts.org). Jaime also has the opportunity to have a photo shoot with a renowned photographer if she is in the top vote count by March 15th, 2009. Please be generous and vote by then if you can! You can continue to vote until April 2nd, 2009 to give Jaime the chance to be the National winner!!
Thanks a bunch….

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Fixations….

14 Feb



Plumbing

Originally uploaded by CleverIndie

Alex’s most recent fixation is bathroom plumbing…
To be more precise, bathrooms have been a fixation for a long, long, long time- to the extent that I was planning on making a zagat’s type guide to public restrooms/coffeetable book with him, but then his interest waned, but it’s back more than ever…

but now it’s not just the volume of the flusher (we are constantly briefed on the loudness of various flushes in different locations)…

It’s how the plumbing actually works.

Which is great. He has declared that he will “grow into a plumber”… He is very interested in the function of plumbing and different types… My dad was in the Navy and was stationed in France and experienced a type of plumbing that was a hole in the floor and there was a tank and you flushed and the whole room “flushed”….Alex is entranced by this sort of lore…. I’m just happy that my kid and my dad can connect on something. We made a special call to my dad so he could tell Alex about the “room flusher”. I cannot even begin to describe the sheer happiness and twinkle of Alex’s whole being as he hung on to every word…

This morning he sat down with some heart shaped crayons I gave him for Valentine’s Day and he drew a public restroom….

If you click on the image it will take you to Flickr, I put notes on all of the parts….

If you don’t feel like clicking, see if you can spot some of Alex’s details:
The “rinse” holes on the underside of the rim on a “sit down potty”….The bolt that holds the toilet to the floor (I think Alex thinks that if the toilet is not bolted down it would rise up, like on a cartoon geyser). There is a urinal (“stand up potty”), urinal cake/strainer thing on the drain, a little water, flush levers, a double knob sink, faucet, and u shaped pipe/drain/trap…. Two light switches that correspond to the four lights on the ceiling….

These are the sort of details kiddo fixates on. These are the sort of details that make any conversation about any other topic virtually impossible. There is no room for anything else in his world until he exhausts all of the information and answers all of his questions on plumbing. This sort of fixation could be the thing that pushes him ahead in life and makes him an expert in whatever field he choose. It is also the sort of thing that can make introducing any other information that is presented to a five year old, at home and in school, an effort that falls short. It can be an exercise in frustration.

So we embrace it, what else can we do? But it also means that we have to present information a million different ways and we always have to relate it to plumbing. And there are some concepts which cannot readily be applied, to plumbing. But we push on….

It’s also his adherence to rules that keeps him safe- don’t touch xyz results in him having a dramatic fear of xyz. Introduce any other information about XYZ, any functional or mechanical information and you can forget any rules about “don’t touch”… He understood “don’t touch” with the raclette (table top grill thing….social food prep, like fondu, but with little pans….) until we explained that it heats up to cook the food… Then he had to touch it, and he burned his hand. (not bad, no blistering, but it was a shock to him, now he knows…)

Explain that something has a function, or some sort of mechanical feature, and he has to try it. He cannot hear “no” or understand “don’t touch”, he cannot resist the impulse to touch it and try it. We are very selective with what we introduce, as anything that is introduced with any hint of being a machine with movement and function will have to be explored fully.

Today I walked into the den where my husband and Alex were playing with a log set from kiddo’s uncle. One of the guys that came with the set had a gun.

Alex has seen guns before, on TV and in a section we did on safety. We had left, I thought, his knowledge of guns to: if you see one tell an adult, do not touch, danger, etc… When we did the online safety exercise thing they had a section of picking out the dangerous things and the things kids don’t touch. Alex thought the gun on the coffee table in the picture was a dinosaur bone and his take on it was that you never touch dinosaur bones because they could break and the museum wouldn’t be able to use them and everyone would be mad, so you never ever touch dinosaur bones. We explained that it was not a dinosaur bone but it was still a “don’t touch” and of course we let him know that his dinosaur bone thinking was spot on as well, because hey, would you want a kid with my grace handling a rare fossil? Probably not…

but today my husband was explain to him what the toy-guy was doing. He explained the mechanism the guy was handling.

The mechanism.

I’m so angry and so frustrated.

Guns are off limits. Alex does not have impulse control. He is obsessed with mechanical things and machines.

Now if he encounters a gun I am 99.9% sure that the “don’t touch, tell an adult” rule is going to fade away as curiosity gets the better of him.

He can’t resist.

We have a few firearm enthusiasts in our family, my husband and I had the conversation about guns and our child long ago. We both, at the time, agreed that education is the most important part of the safety strategy.

I confronted him about what he was explaining to Alex. He insists Alex wasn’t listening anyway. Even if Alex got one little word of “fanning the hammer” (which is what Jeff was explaining….Fans, by the way, are Alex’s other obsession, so I doubt all information really bounced off of him) I know that we can no longer trust Alex’s rule-based response to guns. I know that if he comes across a gun he will pick it up and he will play with the parts to figure out cause and effect.

I am furious and terrified.

My husband maintains that he would rather educate Alex than have him try to figure it all out when faced with a firearm. This was our original plan. But this was before Alex. Before we knew him.

I just want to know why the frick this is the only of all of our original plans that survived? Everything else changed. Every plan, every dream was rewritten or erased or replaced. There’s a book out on parenting special needs kids called “You will dream new dreams”, and I do, and we also make new plans, that are appropriate. I want to know what else has my husband not edited or rewritten, in consideration of the fact that we don’t have a regular, neurotypical kid, we have Alex.

And I don’t want to lose Alex.

Assuming Alex can use information appropriately, when it is relating to something mechanical, something with cause and effect, one of his fixations, is as erroneous as thinking that he can land a jumbojet blindfolded. I spend my days reworking our world so that Alex can thrive. I’m furious that the person whom I thought was in this with us is comfortable enough that he can forget for a moment and put my kid, OUR kid, at risk. I’m exhausted because there is no rest. There is never a moment where I can lay my head down and not think and be peaceful. Every moment is full of what I have to do. I guess I’m just jealous that my supposed partner gets to take breaks(mental and physical) and doesn’t have to worry because I’ll always be at attention and watching his back, and Alex’s.

But who watches my back, who has bothered to learn about him and is willing to accept and understand and really love him and understand what we are going through and have gone through over the past 6 years and how much more until I break completely?

I’m exhausted. I really feel like it’s just Alex and me in this world. It has been since the beginning. I am just exhausted.

Thanks for listening to my rambling…

xo
Bek

HOW TO: Offer Multiple Shipping Options on Etsy.com

21 Dec

UPDATE:  5/4/2012… Apparently this no longer works.  I will keep this post up on the blog but it has been reported to me that this method no longer works as Etsy has rolled out and is continually rolling out new seller/checkout/shipping features…This was from way back when, in the very early days of Etsy…. I guess I’ll keep it here for historical reference…

UPDATE: 1/27/2011…  Not sure that this works with the newer Etsy checkout… Anyone want to try it?  Report your results in the comments section please!  Merci!

(UPDATED with international info…It’s at the end of the post)

Here is how I am offering multiple shipping options without the whole “convo me” and paypal invoice thing…

I read the article in the storque about setting up paypal so that transaction shipping info would be taken from the etsy transaction and brought to paypal…

I thought, “hey ,why can’t I do the reverse to use paypal’s shipping features when the customers are in the paypal portion of checking out”…

So…Here’s how I did it.
I went into paypal and clicked profile(under “my account”)

Under “selling preferences” I clicked “shipping calculations”

Here you can add methods…Each method gets a line, so you can customize what is charged.

For example, for my goods, and in my Etsy shop I have the base shipping (on domestic US) as:
$2.75 ($0.50 if shipped with another item)…
So for each entry in my standard shipping profile in PayPal I would put items 1-1 $2.75, 2-2 $3.25, 3-3 $3.75 4-4 $4.25 and 5+ $4.75….

Then I can also add a profile for Overnight and 2 day…

But for those it’s flat rate regardless of quantity (you can also do all of this by weight or dollar amount, but you need to stay consistent with your etsy listings, so doing it by quantity makes sense for most sellers…

Remember, your etsy listing is your agreement with your customer, you cannot go charging some bizarro number in paypal shipping….

To handle this I have explained in my listings what the listed shipping price is for (usps first class) and that other options are available when completing their payment in paypal…I also list those methods and their charges in my listing so nobody is confused and thinks everything ships fedex upgraded for free….

My etsy shipping charge does equal the “standard” shipping charge in my paypal profile.

Now, when setting this up, there is an important box in each little shipping method/profile that you set up…

It says:
Use the shipping fee in the transaction instead of my calculator’s settings:

If you click this, it will use the amount you specified in Etsy.  If you leave it blank, your customer should be able to choose their shipping method (if you have multiple methods…if you only have one method, and do not want to offer speedier shipping then you probably should just disregard this post as you don’t need to do this…

( Here’s the article that got me moving in this direction:
http://www.etsy.com/storque/how-to/customer-care-how-to-for-sellers-shipping-costs-and-paypal-399/ )

I do think it is important to explain to the customer what your listed shipping is for and that they have choices once they are in paypal…

Also, if you are shipping fedex, you will need your customer’s phone number for the airbill… I chose “optional” for the phone number request in “Website Payment Preferences” under paypal/profile for the time being…

I really hope this helps someone!

I wish I had figured this out sooner!

I do have to update my listings (take out the date specific/holiday stuff) but I think it gives a good picture of how I am managing this idea for my own shop….You can see it here: CleverGirl.Etsy.com

Hugs!

xo

Bek

NOTE:  This is for domestic US shipping.  I believe the international shipping could be tweaked the same way but the parameters of shipping various goods to international destination is quite varied.  The method outlined here is how I am doing it. Your Mileage May Vary.  No guarantees, warrantees implied.  Not responsible if problems occur. Etc… Basically: here’s what I did, you can try it to, if you want to, but if it doesn’t work for you then I am not responsible.  Everyone has very different needs, requirements, goods which may make this method ineffective or impractical… I may have skipped steps. I tried not to, but things happen….   I will answer questions if I can, but I am swamped.  The best teacher is experience…It’s worth investigating all of the details before commiting to anything…  (and I am not tech support…I am a silversmith…) Sorry if this sounds harsh…. Hugs! Peace! Love all around!

INTERNATIONAL: For international orders I have two shipping profiles in Etsy, one for goods that are priced above $50 and one for those that are below $50,  due to importation requirements for most countries… So in this case, I chose to use the information from the etsy.com transaction to override shipping options in paypal.  PayPal allows different options for domestic and international- including which info is used… hope this helps…

If you would like to be added to my blog email update list, please click here

MULTIPLE SHOPS:  I have not tried this for multiple shops… If you try it and have success(or failure, as long as we can learn from it) with multiple shops let me know and I’ll post an update here , or blog about it and I’ll post the link… I cannot even wrap my head around the basic logistics of two shops right now, so in the interest of my sanity and accurate information, I’m taking  hands off approach to that one…

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…)

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