Tag Archives: technology

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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Hello Friend.

26 Dec

Hello.

Originally uploaded by CleverGirlBek

Boy’s big wish from Santa this year was for an “xo laptop”…

We decided to tighten our belts more, suck in our guts, and instead of a mountain of less expensive goods that get lost in the shuffle, get him one through the “Give One Get One” Program.

The benefits are many.
1. We bought one, the one that we gave will go to another child somewhere else in the world as an educational tool…

I love this idea, but our home economy doesn’t really allow for this degree of charity… After all, almost all of our money, goes to directly support individuals with type 1/juvenile diabetes, arthritis, autism/asperger’s, and depression and a slew of other issues.  When looking at the cost, the “2-fer” part makes it look positively cheap… When looking at the reality that we just get one for $xxx it is still a wise investment as it will help boy with skills in all areas. Sure we could do that on our regular computer, but that would wind up in lost time and money (on hold with customer service, having computer serviced, possible emergency intervention by Geek Squad) and the cost quickly (trust me on this one) takes care of itself…

2. Our mac may now be safe from the mad clicker/deleter…. He has no interest in our boring mac’s.  He has a swanky, rugged looking, very useful machine that we are not yet regulating…(the xo will have to go on the same “time bank” as other activities, but we are giving him another day to explore…)

3. This is an adventure for all of us- we are mac and ex-windows XP people…So we have quite a bit to learn…The “xo” let boy jump right in and explore… So far he has drawn pictures, made digital music, written some bits for a story he is working on, played “secretary” with me (he dictates, I type…), and made the speech emulator say “Who farted?” followed by a laugh that he had to spell out…He also took a bunch of photos of himself. The amazing thing is that we didn’t show him any of it. We showed him how to open the case and shut the system down, but that is it. He is learning this new-to-us OS the way I learned mac… Marie Montessori is smiling down on us…

4. I tried to explain the “give one, get one” thing to him and the intentions of OLPC, and his interpretation seems to be that there is a kid, elsewhere in the world, that he is connected to because they have, in a way, twin computers. I think his perspective is somewhat like my own at his age- do you remember those “for the less of a price of a cup of coffee” from back in the days when a cup of coffee was less than $0.40 commercials? Well, I wanted siblings when I was a kid and I was adopted. In my brain this equated to being able to buy a sibling for $0.40/day. I remember rolling coins for my mom on occasion and thinking, “Wow. This is like a month of a sibling.”…I digress…

Speaking of the concept of “other” and a world without boundaries, I know it’s probably not possible (or way far outside of my noggin to even think about without sweeping some other important stuff off the table) but it would be amazing with the give one get one if participants on either end could opt into a penpal sort of a program (via the xo, of course)…

Anyway, here is boy waving and saying “hello” to whatever friend may be out there….

(and check out that sweet swiveling screen! I have already been informed “Your Macbook screen just sits there”… :-)

Anyway, there is more to chat about regarding our Christmas morning, gifts, mayhem, etc…But I am going on day 2 of being in bed (boy is sitting on my bed in the photo…he grabbed his laptop and sat right next to me with our CushTops/lapdesk-y things and we went to “work”….

Wondertwinpowersactivate!

11 Sep

Wondertwinpowersactivate!

Originally uploaded by CleverGirlBek

Ok. So I’m finally starting to catch up on this end….

I finally received my Dexcom Seven STS (Fedex in Fort Myers was holding it hostage and didn’t bother to notify anyone…Seems the shipper forgot to put our unit #) which, and this is the short version, tests my glucose and gives a result every 5 minutes….

The sensor that samples the interstitial fluid is really tiny, although the applicator scared the crap out of me… I’m not big on the “insertion” devices when it comes to my pump infusion sets (sub-q catheters) as I’m a bit of a control freak- I don’t like my subcutaneous needles to go fast- I can’t handle the anticipation and the build up- I like to put them in slow and mellow…. It hurts less that way, at least for me…

Anyway, I have been wearing this thing for 2 weeks and I’m so surprised that each sensor did stay on (with strategic adhesive reinforcements and glad press and seal during showers to protect the adhesive) for the two sessions and they were not uncomfortable (occasionally the one in my belly felt like it was giving me an electrical zap…annoying, but very intermittent….

I am realizing that there is a huge learning curve for these things… As there was with my pump, which I am relearning right now as well to help get in better control…

The transmitter is manageable – fairly small- like a small disposable lighter. This week I have been wearing it in my arm (way less painful than insulin injection or pump infusion set insertion in the arm…pleasantly surprised…) as having it in my belly last week showed a whole bunch of “noise”…More likely than not the noise was from my purpley lightning bolts of fury (stretch marks from my giant preggo belly when I was carrying the big guy)…So this week I tried the arm…

The receiver is another story- not crazy about it. It’s freaking huge. I rigged a hook to it to hang it from my waistband as it came close to taking a dive a few times, and it is not waterproof. I did order a great little pouch from diabetesmall.com but I’m kind of digging being able to check the screen without opening the velcro flap…Still undecided….
This week the receiver keeps losing contact with the sensor and transmitter and it is making me nuts- a simple thing like having the transmitter in contact with my mattress or the receiver near my laptop seems to disrupt it.… So far I know not to rely on any of the numbers but the dexcom is helpful for following trends and hopefully adjusting my insulin dosages/basal rates, but I’m still testing with finger sticks like a maniac (around 10 times a day lately) and noticing some fairly wide differences in numbers…

The one thing I am really disappointed about, that I may return this and try for the Navigator, is that this doesn’t alert you to potentially dangerous trends (potential lows and highs) but it does alert you when you go above or below a certain point. I knew this going in, but I don’t think I realized how important that feature is in my world… As my hypoglycemia unawareness is pretty lousy and a low leaves me out of commission for up to 24 hours these days, and interstitial fluid readings are around 15-20 minutes behind finger sticks, I would like, at the very least, a higher “low” threshold… The other day I was registering as low at 90 but my fingerstick was 45. For me, that is too late and a little scary (especially in the middle of the night) and made me wonder if one of my reasons (I had a few) for wanting this bulky technology in my life is now invalid…

I mean, trends are going to save my life, but the way I look at it- the warning of lows, in advance, could save my kid’s life and my life and will give me back more time that I am losing from recovering from the highs and lows….

More on my Dexcom Seven experience over the next few weeks…. Still trying to figure it out and make a decision…

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