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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…)

Wii Fit.

21 May

Yes. I did it. I preordered the Wii Fit from Amazon a few weeks/months (who can remember?) ago and it arrived today.

While I do need to lose weight and get my overall health and fitness into much better order, I find it hard to stay motivated while dealing with all of the kid issues (a “normal” person would be exhausted after all of the therapy/activity stuff) and my bone, muscle, endocrine, pain, and general malaise and fatigue. I have a doctor who barely looks at me when I come in his office- it’s not just me, I’m 99% sure he does this with all of his patients. It’s like he’s a librarian of my medical stuff and can access it and then he can pull other information for suggestions- but he is very by the book. I had a horrible experience taking statin meds but he insisted I try them to lower my (then slightly elevated) cholesterol. Found out that Statins and NSAIDS have the same response with me: swelling of extremities (I’m not talking pre-period bloating, I’m talking totally deformed swollen…causing stretchmarks amount of swelling) and everything gets stiff and it feels like I am walking through molasses…Even like my jaw has cold molasses in it. And I couldn’t stay awake. I was scared to be home alone with my little guy (he wasn’t in school yet). But because statins seem to beget lower labs, damn the side effects full speed ahead I swear he probably has every patient in this city that has either numbers that are below (in the ones where they are supposed to be below) the ideal by less than 20 points and every patient who may or may not be at risk from other health issues and genetics on statins. So I have refused statins. We tried a couple, all had the same reaction and I cannot function like that. So I told him I was going to take 6 months to lower my cholesterol on my own and if that didn’t work I would try another cholesterol medication. Guess what? My overall number dropped 100 points…All of the other numbers are where they should be and I was so looking forward to that call from his nurse last month to just hear her say “ok, see you in three months”

But once again: “Dr. Xyz wants you to start on vytorin again. He said that you mentioned that the side effects were difficult to manage but he feels the benefits outweigh that.”

Benefits outweigh the side effects? My numbers are better than perfect. Another doc even said “wow, your labs are better than mine and I don’t have all of these issues”. I have been working my butt off.

For what, for just in case? Adding a med with the side effect of me not being able to process information, speak, walk, talk, and in general be an interactive human being at even a basic level? No freaking way.

Anyway. So this doc is also the king of spitting information out without considering the patient. Most of the docs down here in Florida seem to be of the “one size fits all” approach (not meaning physical size, just treatment of medical issues/disorders/diseases/etc in general) . So I have damage to my spine that is getting worse (long long long story that I will entertain you with next week if I remember)… I had a tumor that gave me osteoporosis, ulcers, and a whole slew of other things. I have muscle spasms (freakishly giant charlie horses that kick the shidoobie out of me multiple times a day). I tell the doc that I am trying to walk more, take extra steps, etc… when I can because being sedentary is not the answer (my body is old at 32. like really old. like so old that I watch tv where people are complaining about crows feet at 32 and I want to blow the TV set up, but I really don’t have the strength and energy to move it to a safer location and it is one of those light weight and small ones) and that I want to do something to feel better in this medical freak body. I feel like I’m on the right path… I’m seeing better glucose readings and clearly my cholesterol has dropped but then he drops his prerecorded message.

“You need to exercise for 45 minutes, x number of days a week”

The prescription.

I refer to this as the last prescription.

Because I have heard this many times. Because I believe that starting parameters such as this are overwhelming to Joe and Jill Average who have a couple of kids, both work full time and they are caring for an elderly parent (general scenario)… I’m disabled- my body is freaking beaten by time and arthritis and being in the wrong place at the wrong time- I do get out of bed everyday but it takes 10 minutes to get to my feet and start walking. I have days where I can only shuffle to the microwave to heat a heatpack. 45 minutes of anything pretty much doesn’t happen.

45 minutes is too much for many people- it’s a giant chunk of time in an over-scheduled world. I’m not saying that there is anything bad about 30 or 45 minutes of exercise – I am hoping to get there some day.

But until I adopted the idea of taking baby steps and using quantitative measurement of my progress (I use a step counter daily and try to increase daily) and setting reasonable goals within a reasonable amount of time- goals that I knew I would have to work hard for but that weren’t crazy like “drop 100 lbs in 1 month” stuff; until that moment that I realized that something is better than nothing and I own this, then that was the starting point for me getting healthy.

Anyway, back to the Wii Fit. I really like that it takes different measurements of different skills and charts progress. It gives you the option of setting goals. It tracks your time. I just got lost in it (while I was setting it up before kid gets home so he can try it- I think it will be helpful on an OT/PT level with improving his and my balance) for 18 minutes. For 18 minutes I worked on my posture and balance and didn’t notice that the time had gone by. I have been sick for the past 2 weeks (on top of the regular physical stuff) so 18 minutes, in my book, is a huge step in the right direction from 0 minutes for the past couple of weeks (in total) ….

The activities are fun and look simple enough…Maybe for Average Joe they are… Not so much for me… But I could see little blips of improvement and especially with the balance games I found it had a nice blend of body vs. brain that most other games don’t offer… The balance controls, the way the wii fit platform interprets your movements is pretty cool and, at least for me, seamless. It’s fine control in some activities. I was a bit skeptical that the platform would wind up being like DDR -but the precision is crazy and unlike our DDR mat on the carpeting you don’t need to stomp- and actually I’m finding that there is a bit of a learning curve with the Wii Fit platform because I’m not used to not having to do anything with my hands and a controller to make the characters on the screen react. And my brain is saying “don’t stomp! you don’t need to stomp!”…

Anyway, the message is: something is better than nothing, set goals- set them in reasonable bits- attainable but will require work, and not so long term that it’s hard to see the reward…. Also if your doc really isn’t listening (I’m not talking about disagreeing, I mean doesn’t make eye contact…Suggests menopause treatments and you are a dude- that sort of thing…) Then get another one. Listen to your body. Figure out what motivates you or what is accessible to you. I have ADD- even if my body could, my brain can’t do anything for more than a few minutes at a time, so variety is the spice of life for me… Learn the tricks that move you and work with them.

And stay tuned for more updates on my Wii Fit experience…

Impressions right now:

easy to use and for all ages (although stepping on the platform to get his initial info is proving challenging to my little guy…placing him on it seems to work but just annoys him :-)

-all fitness levels, but may require modification – leaves this up to user…

-running game is pretty neat- you can really go at your own pace and if you go to fast the mii trips and falls over and it reminds you to not exceed your personal limits… Also tells you that a steady pace is best (so not for windsprints at this level, not that I am in any shape to do them)….

-Soccer balance game is neat- you head the soccer ball and try to avoid flying shoes and panda bear heads (that look like soccer balls from far away)…Really like the brain/body/reaction concept… Warning: people under 20 and anyone who likes the type of humor along the lines of The Stooges will probably enjoy heading flying cleats for a few rounds (until they realize they are losing points each time)…

-some exercises may not be possible for some folks due to health issues/injury and people really need to listen to their bodies… The tree pose wants the foot on the inner thigh- I have a busted hip so that is not going to happen any time soon… I wish they did have modifications especially for those with injuries or other health issues/precautions or just plain beginners….

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